March 6, 2024 • 43 mins
On this episode, I am joined by Jasmine Ivanna Espy. We discuss her experience with having hidradenitis suppurativa. It can be a condition that feels lonely and at times has felt embarrassing. She has prioritized helping others not feel the same and bringing awareness to this condition.
Hidradenitis suppurativa or HS is s painful, long-term skin condition that causes skin abscesses and scarring on the skin.
She founded the Association of Hidradenitis Suppurativa and Inflammatory Diseases. They want to empower people living with HS to better understand their disease state and take courageous action toward receiving treatment, engaging with the community, and improving their overall quality of life. Every year they host an annual summit. This year it will be held June 6-8th, 2024 in Detroit, Michigan. It will be 3 days filled with sessions, demonstrations, workshops, and community engagement opportunities.
I RECLAIM__ HIDRADENITIS SUPPURATIVA SUMMIT — The AHSID
2023 Hidradenitis Suppurativa Basics Booklet (adobe.com)
Jasmine “IVANNA” (@whoisivanna) • Instagram photos and videos
AHSID (@theahsid) • Instagram photos and videos
Ashley (@filledupcup_) • Instagram photos and videos
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Episode Transcript
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(00:00):
Welcome to the Filled Up Cuppodcast.
We are a different kind of selfcare resource, one that has
nothing to do with bubble bathsand face masks, and everything
to do with rediscoveringyourself.
We bring you real reviews,honest experiences, and
unfiltered opinions that willmake you laugh, cry, and most
(00:21):
importantly, leave you with afilled up cup.
Ashley (00:32):
I am very excited.
I have Jasmine Ivana Espyjoining me today.
She is the founder of thenonprofit, the Association of
Hidradenitis Suppurativa.
Please forgive me if I've saidthat wrong and inflammatory
diseases.
Thank you so much for joining metoday.
Jasmine (00:50):
Of course.
Thank you so much for invitingme.
I'm really excited to talk toyou and share my journey.
Ashley (00:56):
And I do just want to throw out the disclaimer that
neither one of us are medicalprofessionals that we're just
sort of sharing from personalexperience.
For anybody who's not aware, canyou explain what Hidradenitis
Suppurativa is?
And I'm going to refer to it asHS, going forward.
Jasmine (01:14):
Yeah, absolutely.
So Hidradenitis Suppurativa is adebilitating chronic skin
condition also referred to as afollicular occlusion.
Hs consists of painfulreoccurring deep seated
abscesses that may start aspustules, which are small pus
filled bumps, but they can alsogrow to the size of a golf ball
or larger.
The abscesses and lesions ornodules are typically painful
(01:37):
and release.
A very foul smelling puss whenthey burst abscesses can really
develop anywhere on the bodythat there's a hair follicle and
they just don't appear in areasthat skin touches skin sort of
like how some of the reportssay, but they can really show up
anywhere that there is a hairfollicle on the body.
The only place that they can'tshow up there on the palms of
(02:00):
the hands, the soles of thefeet.
Or the red part of the lips.
So I just want to make sure thatpeople are aware of that.
Especially when they'reconsidering seeing a physician
or wanting to see a physician.
There are several differentstages of the condition.
It's typically diagnosed bysymmetrical scarring on both
sides of the body.
So, for example.
(02:21):
Well, if I have HS on this side,it's typically like the nodule,
you sometimes get tracks andscar tissue and open wounds and
drainage.
And then if you see it on thisside of the body, the left side
of the body, you'll see it onthe right side of the body,
either in a different area, orin the same area, for example,
armpits and so it can beextremely debilitating and it
(02:42):
can be very costly to treatbecause.
There are different medications,biologics, treatments, tests,
and things of that nature thatare available to sort of help
patients deal with thesymptomology of HS.
Ashley (02:54):
That does sound like it would be very painful and
potentially, depending on whereit was popping up, maybe
embarrassing at times too.
Jasmine (03:02):
Yeah, absolutely.
I remember, for an example, whenI was in high school and middle
school was like, middle schoolis when I developed it.
I went to a private school andwe had to wear these white
college shirts.
And so I was sitting.
Like two rows before the door.
So it's like on the left handside.
My principal came in to makethis announcement.
(03:23):
And so I had a question.
I raised my hand.
And so my classmate, like, I'moblivious to anything that's
going on.
Right?
So my class classmate is like,Jasmine, your arm is bleeding.
And I'm just like, I look downand I am embarrassed.
And everybody is looking at meand I'm just stunned and I'm
frozen because I'm just like, noone knows what this is.
I haven't explained this toanybody.
(03:45):
And now I have a big blood spotscovering my whole armpit on my
white collar shirt.
And so I was completelydevastated.
And I was just like, can I go tothe bathroom?
And I just rushed into thebathroom.
I called my mom and I wish shewould have handled the situation
a little bit better.
But, you know, she told mebasically, because I had this
condition to make sure I bringlike an extra shirt with me, but
(04:08):
I didn't this day, and so shewas kind of upset with me that I
didn't, but, being a childdealing with something like
this, I've never dealt with achronic illness.
So I love my mom and she is mysupporter and she still is and
always has been, but that was amoment where I was just like,
okay, I really would have wantedfor you to say something else to
me in a moment where I wasembarrassed in front of my whole
class and teachers and studentsand the principal, like, you
(04:31):
know, so when we talk aboutembarrassing moments, H.
S.
definitely, that was one of themost pivotal ones that kind of
like affected me as a child.
Ashley (04:40):
Well, and especially those middle school and high
school years, everything seemslike, life or death, like your
feelings and emotions are soheightened as it is that.
I could see how it would belike, don't ask me if I have
another shirt, like just fixthis in this moment.
Jasmine (04:57):
Yeah, exactly.
I just wanted to really be heldin that moment and told that
everything would be okay.
Even though I felt like, and Ididn't know if anything would be
okay.
There were no real treatmentsback in that time when I had H.
S.
I didn't have a physician whocould help me to deal with the
symptoms.
They were pumping me full ofantibiotics and that wasn't
(05:17):
helping at all.
I put in a myosin and rifampinand I was like, okay, you know,
this isn't helping at all.
And I'm still getting, H.
S.
abscesses and I still have openwounds and scar tissue, you
know, so it's tough.
It's tough at any age, butespecially as a child, they can
really alter your brainchemistry for sure.
Absolutely.
Ashley (05:36):
When somebody thinks that they might have HS now,
would they go to their regularGP?
Would they go talk to adermatologist?
Like how is the actually gettingdiagnosed part.
Jasmine (05:48):
Yeah, so this can be a bit tricky because not a lot of
physicians know aboutHidradenitis suppurativa across
all practices or disciplines itcan be difficult to get a proper
diagnosis depending on whatstage you have it can present as
different conditions.
For an example, if you haveCrohn's disease, Crohn's disease
also comes with lesions that arevery much similar to
(06:10):
Hidradenitis Suppurativa.
Some people have had it mistakenas herpes, because they have the
smaller nodules and lumps,which, you know, HS is not a
contagious condition.
And there's nothing wrong withhaving herpes or anything of
that nature, but it's good todifferentiate the two when
talking about.
Symptomology and then also likethe definition of disease and
(06:31):
presentation.
So when somebody suspects thatthey have HS, it's always
recommended to see a specialist.
I want to give a shout out tothe Hidradenitis Suppurativa
Foundation because they have anarchive of different.
Physicians that you canbasically go on their website
and look at a map and get a listof these different physicians
(06:53):
that could potentially be nearyou or in your area.
So if you don't have access tosomeone like that, and they're
not close, I would definitely goto see your PCP and ask and talk
to them and say, hey, I think Ihave this condition.
Can you look more into this?
Ask your colleagues about thiscondition to see if I can be
(07:14):
diagnosed with this and if I canstart a course of treatment, I
think that's the best way toapproach it.
Ashley (07:19):
What kind of treatment options are available?
Jasmine (07:21):
So typically when it comes to treatment, the first
round of treatment, depending onwhat stage you're in, is
antibiotics.
So they'll start you onrifampin.
Clindamycin or some otherantibiotic medication.
And they'll start differentcourses of that medication at
different strength depending onthe severity of the disease.
And when you think aboutantibiotics, people
(07:42):
automatically think, okay, sothere's a bacterial infection,
but antibiotics are also, atstage 1, for example, and
sometimes stage 2, but notreally, it's more like stage 1
HS, which is like moderate.
It can help with inflammation.
So that's why they prescribe theantibiotics is because of it
helps to lower that inflammatoryresponse.
(08:03):
So that's usually the typical.
First round of treatment, andthen there's also depending on
how your H.
S.
is triggered.
You might go into hormonetherapies, women with periods or
people with periods mayexperience an influx of nodules
abscesses, scar tissue drainagearound their cycle.
(08:23):
So if that's the case, theremight be a hormone imbalance.
And so there's hormone teststhat patients or people who may
have a HS or have HS can take tosee what.
Hormones, they may need tosupplement in order to get that
balance back to where it needsto needs to be.
There's also biologics and otherinjections.
(08:44):
For an example, for biologics,there's Humira, which is FDA
approved, and Cosentyx just gotFDA approved as well for
Hidradenitis Suppurativa, whichis amazing.
Humira is targeting the TNFalpha gene, and then Cosentyx
actually targets a differentinflammatory response.
So there are two differentbiologics and they help with two
very different things, but theyboth can be helpful for HS,
(09:06):
depending on who you are andthings of that nature.
Ashley (09:10):
Other than say hormones, are there any other triggers
that are commonly seen or issomething that you've found for
yourself that will bring on anoutbreak?
Jasmine (09:20):
Yeah, that's a great question.
So typically HS So, I'll say itlike this.
Everybody's triggereddifferently by HS.
So, if you think about HSpatients, think of like
snowflakes.
No snowflake is the same,apparently, you know what I
mean?
So I definitely think it's thesame thing for HS patients.
So, it presents differently ineverybody, and we don't know
(09:40):
every single trigger, but someof the triggers that we are
aware of are some people mighthave reactions to certain foods.
Some people might have reactionsto hormonal imbalance, stress
can also be a trigger.
There's also emotional triggersthat there isn't a lot of
science behind the emotionaltriggers, but I have talked to
patients who have said thatafter a traumatic experience
(10:01):
with their bodies or anexperience that has kind of like
altered them in some way thatthey started experiencing H.
S.
So there are so many differentfactors that are involved that
they're not exactly sure what,but it's important to pay
attention to your body.
So like, if you're stressed outand you notice that you didn't
have a nodule, then stress mightbe the trigger.
You know, if you eat dairy andyou notice that you have a
(10:22):
nodule, you're experiencing moredrainage, then dairy might be
the trigger, but it could beneither of those things as well,
but it's always important tolisten to your body and to
connect the dots as much as youcan.
Ashley (10:32):
That must be really frustrating listening to
yourself, checking in withyourself and thinking, okay,
stress is my trigger, so I'mgoing to do everything I can and
then for that not to be the casethat it must be really
frustrating and kind of feellike there isn't a lot of
answers out there or that youare kind of, I don't know, like
stuck by yourself trying tofigure it out.
Jasmine (10:52):
Yeah, I can feel like that for sure.
I know that I can speak to myown journey like.
At first, I thought diet was mything, and I went on this whole
diet change a decade ago.
I was 350 pounds.
So similar to the same size thatI am now again.
And I lost over 150.
I got to like 180 pounds.
I was eating AIP vegan.
(11:14):
Then I started incorporatingmore like fish into my diet.
And so I noticed that my HS gotbetter and there was one
specific moment during this timewhere all of the lesions under
my breasts and on my chest justcompletely healed up with no
medical intervention at all.
And so other areas of my bodydefinitely did not heal, but.
(11:34):
I didn't have as many abscessesshowing up in those areas.
And then the lesions in mybreast just kind of just
disappeared, which was amazing.
So I guess what I'm trying tosay is that I thought that that
was the trigger at that point.
And then later on, stressstarted to affect.
My HS and like the presentationof my condition and then it was
(11:55):
hormones.
Our bodies changed so much thatthe trigger for HS can change as
well.
So really dealing with HS isabout being vigilant and patient
enough to listen to your bodybecause your body is not against
you.
It's communicating with you.
And so once I started realizingthat, like, That it's not trying
to do this on purpose to attackme.
(12:16):
It's really trying to tell me,hey, something's wrong and we
need help.
The issue with HS is, is thateven though we do have treatment
options, not all of them areeffective.
So somebody might go, you know,and try all the treatments and
they're still dealing withsevere HS.
And so it can be infuriatingbecause it's like, what is going
to work for me?
It's a very complex conditionand it.
(12:38):
shapes and changes and I'veexperienced it myself, you know,
Ashley (12:43):
it must be really frustrating to you because with
anything of not knowing thecause of it, the expense that
comes through trying differentmedications or trying different
diets or lifestyle things thatall of it can seem really
frustrating when you're puttingthe money out and then not
seeing the return in the sameway.
I can only imagine for stress,like there's no way to 100
(13:05):
percent avoid stress completely.
And I almost feel like if you'retrying to avoid it, then it
makes it bigger in a way that itwould be really hard for people
when that's their trigger.
Jasmine (13:16):
Yeah, of course.
And I want to kind of likerephrase what I said, because
avoiding stress is not I'm not Idon't mean that in like this
toxic positivity type of likementality, because sometimes it
can be interpreted as that,like, ignore your stress and
it'll go away.
It's not like that at all.
I guess one example I can.
Provide is that I had mygirlfriends came into town and
(13:38):
this was when I had a reallyrestrictive diet.
I had a sip of sangria and thenthe next day I had a nodule in
the back of my leg.
I don't know if that was becauseof the sangria.
All I know is that, you know,after A, B happened, you know so
that wound was.
Open for a year.
It would not close.
It would close and open.
Close and open everything.
Not really that much drainage,but it would just be a hole on
(14:00):
my leg.
And so during that time, I had avery stressful job.
And a year after that, I gotfired from my job.
And so a week after gettingfired.
The wound in the back of my legjust completely healed up
because I was no longer in astressful situation and I was
actually in a position where Iwas able to do a lot of the work
that I'm doing now full time,which was my passion.
(14:22):
So I was following what I hadthe desire to do.
So even though I'm stillstressed, like, you know what I
mean, but I'm not stressed in away that I was stressed at that
job, if that makes sense.
I hope that clarifies thatbecause I definitely think that
I still deal with stressfulsituations for sure.
But I definitely thinkmitigating stress is depending
on like, what is this thing?
(14:42):
Like, is it causing anxiety inyour body?
Like, you know what I mean?
Are you feeling depleted?
Are you feeling like you're notcompleting your purpose in life,
you know, things of that nature.
I'm not saying that that's theHS either, but some of those
things.
help to reduce stress and putyou on a path where some of the
treatments might help and younever know.
You might be surprised at whatyour body does.
Ashley (15:03):
Have you found that there's certain products that
help?
Like, when you're talking aboutthings seeping and having
nodules that aren't healingproperly, are there things that
you found for you personallythat work better than others?
Jasmine (15:17):
Yeah.
So there are so many differentproducts that are available for
HS patients.
I mentioned some of themedications but when we're
thinking about sort of likenaturopathic or holistic care or
just topical I want to give ashout out to my magic healer.
If you're listening to this andyou want to try out my magic
healer, I actually have a codewith them.
It's Jasmine 10 J.
(15:38):
S.
M.
I.
N.
E.
and that's the number 10.
And my magic healer is an allnatural product.
That has had proven results inthe community.
So they have on their site.
A lot of before and afters ofusing.
These products and things ofthat nature.
So that's a really good product.
Clean skin is also another oneas well.
It's a wash and there wasactually a study conducted by
(16:00):
clean skin and HS connect, whichis another patient organization
that basically took the the washand.
They did a study where theywould dab a little bit of the
wash on the wound and then theywould let it dry out and it
helped with some of the itchingand some of the other
symptomology that's associatedwith HS as well.
(16:22):
So I definitely would say mymagic healer and clean skin and
then there's also clean andcute, which is a soap that is
made for people withinflammatory skin conditions.
And they've been popular in theH.
S.
community as well.
And so those are a few of theproducts that I typically
recommend when thinking about,you know, how can we like,
(16:43):
naturally take care of ourbodies, but, some of the
medications that I mentioned canalso be helpful depending on,
what your physician may think isbest And also, you know, even
with that I want people to knowthat dealing with chronic skin
conditions should be a give andtake.
So you should also have a say inwhat you do and don't want to
do.
If somebody pressures you intodoing something, they might not
(17:05):
be the doctor for you.
You might need to Move on andfind somebody else because you
don't have to do anything.
You are not comfortable with andthat's that's going to create
more stress and that's going tobe counterintuitive to what
you're trying to do, especiallywith the treatment,
Ashley (17:19):
which is a really good point because not all providers
are the same and it really iswhatever condition that you're
dealing with or any healthrelated things.
You do want to make sure thatthe doctor is advocating with
you and that you don't feel likethey're only selling you one
side.
That it is really important tokind of Seek out, which is why
(17:40):
it's also really great havingthe association.
Like you said that there areother service providers listed
there to be able to feelconfident in reaching out to
somebody else.
Jasmine (17:50):
Yeah, absolutely.
There's such a large communityof H.
S.
advocates, patients, peopleliving with HS, and it's
continuously growing everysingle day.
We're exponentially larger, foran example, on TikTok.
If you search the hashtag,there's over 600 million views
on Hidradenitis Suppurativaalone.
And so when you combine, andthere's several hashtags, if you
(18:13):
combine all the viewership.
On all the hashtags, it's over abillion views.
So there are a lot of people whohave eyes on Hidradenitis
Suppurativa right now.
And so that means that there area lot more voices speaking up.
Not every single source iscredible and that's no shade to
anyone, but that's just what itis.
Not everyone is as knowledgeableas they could be, and that's no
fault of their own.
That's just because of thenature of the condition and the
(18:35):
misinformation that's floatingaround.
But I do want to encouragepeople to reach out and to
connect with people onlinebecause I've met people online
that are my friends in reallife, you know, I hang out with
them.
I just had a person that I metonline who cooked for me and her
husband a few weeks ago.
So, you know, you can reallymake relationships that last.
(18:56):
And then sometimes, you know,when you come out and talk about
your experience, somebody elsethat's close to you might say,
Hey, I have that too, but Ididn't know what it was called
and I didn't really take itseriously, or I just kind of
like dealt with it, you know, soyou don't know what type of
community you might create byspeaking about your experience.
And then also just likeinserting yourself into the
communities that already exist.
Ashley (19:17):
I love that.
I also think that's a reallygood point that a lot of times
people will have something andthey'll be like, I don't want to
go to a doctor, or I don't wantto bother anybody, or I'm sure
that it's just something that'llgo away that they really don't
consider that it actually couldbe a condition and that they
should seek help.
Jasmine (19:37):
Yeah, yeah, and it can be a lot of that is I want to
empathize with individuals whofeel that way, because dealing
with HS, especially depending onwhere it shows up can be
embarrassing and it can be like,you know, I don't want a doctor
to see my body looking likethis, and that can be a
deterrent for going to see aphysician or talking to anybody
(19:58):
about it because it's like, youknow, you might think you're
nasty, disgusting, but that'sthe opposite of the truth.
Once again, the body iscommunicating something and it
just needs assistance.
It needs help.
It needs all the love that youcould possibly give.
And I know that can be difficultsometimes, but going to the
doctor is.
Better than not going and tryingto figure out things on your
own, like shooting in the dark.
And some people will argue medown about that.
(20:20):
But I definitely think thatbecause I've benefited from both
holistic and Western medicine, Ithink that both have their place
and that it's important to dowhat resonates with you.
And to follow whatever pathresonates with you, but I always
encourage people to go see adoctor, even if you feel
embarrassed, even if you feellike somebody is not going to
(20:40):
give you the care that you need,that is a step in the right
direction.
And once you figure out whetherthat person can help you or not,
then you can either redirect, oryou can move forward.
Ashley (20:51):
Absolutely.
How has it been sort ofbroaching the subject with other
people?
Like if you are dating somebodyor do you mention it to friends
that if they say something aboutit, it's that's what it is.
Jasmine (21:06):
Yeah, so I'm very open about my experiences now and the
people who follow me, my friendssee my HS content.
So I don't have any issues withthat.
I haven't lost any friendshipsthat I know of because of my
Hidradenitis Suppurativa I mighthave, I don't know, but you
know, we all have friends.
Ashley (21:22):
You wouldn't want them anyways, if you did, like what
an awful reason to.
Jasmine (21:26):
Exactly.
You know, some people don't likedealing with people with
disabilities and chronicillnesses because it's drag,
whatever.
And it's just like, okay, well,you're not my friend and that's
fine.
There might be this grievingprocess that we go through, but,
you know, that's a part of life.
But as far as dating goes Istill have fears around.
My HS and dating because I'venever really had a substantial
(21:49):
relationship like a realromantic relationship.
So, there's fear still aroundfor me on whether somebody will
accept it or not.
So even though I haven'tnecessarily had negative
experiences.
Honestly, I just definitely havenot been open enough to trust
somebody to reveal somethinglike that.
(22:09):
I think the last person that Iwas sort of like intimate with
they followed my Instagram.
So they asked questions aboutit, but they didn't stop talking
to me because of the condition,and I'm not afraid to talk about
my experience or anything likethat.
But I have so many people aroundme who have been in successful
relationships along with beingHS.
(22:30):
I also have people who are in mycircle who are married and happy
marriages for long periods oftime.
Some of them just got married,you know, and then some people
have experienced, beingseparated from partners because
they developed HS.
It's really about thatindividual's capacity to be able
to support someone who has achronic disease and just like in
friendships where it's like.
(22:51):
It's not your fault ifsomebody's like, I can't deal
with this.
It's the same thing withromantic relationships.
And that doesn't mean that youwon't go through grief.
It doesn't mean that it won'thurt.
It just means that there's sortof a clearing that's happening
in your life.
So it's like, okay, that personis not going to support me.
That person's not going to loveme the way that I need to be
loved.
So good riddance, you know?
(23:11):
So it can be complicated forsome people.
But not everybody experiencesthose complications and not
everybody's going to reject youbecause you have HS.
Ashley (23:19):
I have a girlfriend who has it and she has found
sometimes it can make a bedroomactivities.
It's a little bit harder justbecause, when you do have a
wound and it is open, it's notsomething that's comfortable or
she'll get I'm not sure whatmedication it is, but
essentially they'll inject it inthe root to make the nodule go
away that it at times, yeah,that at times it can kind of
(23:43):
make it, I think so, justpainful and uncomfortable.
Yeah, again, with the rightperson, it makes it all work,
but I know that that's somethingthat at times can be an
insecurity of hers.
Jasmine (23:55):
Yeah, absolutely.
Intimacy and H.
S.
It's difficult to navigate andactually, we just did my
nonprofit H.
S.
or acid just did a,collaboration with Tonal Health,
which is a telehealth platformalong with Dr.
Erin Martinez Jasmine Young, andher partner, Kenneth Blue, and
(24:16):
so we have part two coming up,actually, to talk about some of
these things, you know, how doyou deal with intimacy when you
have a chronically ill body?
How do you explore yoursexuality with your partner or
by yourself and things of thatnature?
Because it's important, you knowChronically ill people, disabled
people have sex, you know what Imean?
So it's important to know how tonavigate that and what to say
(24:39):
where to tell people to touchand where to tell people not to
touch having all of thatlanguage and understanding is
empowering, you know, it mightbe awkward at first because
they're still trying to figureout like, what do I like?
Don't I like, you know but it'sa learning process just like
anything else.
And I think HS provides us theopportunity to be really, really
conscious about that.
Ashley (24:59):
Which I guess like a blessing and a curse.
I guess like the blessing of itis that it does make you more
aware of your body and moreaware of, what you like and what
you don't like.
Even if some of the places thatyou want to be touched may
change depending on if there isa current is outbreak the right
way of saying it?
Jasmine (25:17):
I would say abscess or flare.
We call them flares.
Ashley (25:20):
Flares.
Are there any other likeinternal symptoms that come with
this disorder?
Like pain within the body orother things similar to that?
Jasmine (25:29):
Yes, that's a good question.
So, some individuals mightexperience, like, pain in the
site that the flare mighthappen.
So, for example, if you have itin your armpit, you might
experience, like, you know,intense itching or redness or
tenderness in the area and thenthe next day or the next couple
of days, you might.
You end up seeing a nodule thereyou might experience flu like
(25:52):
symptoms.
So it might seem like, you'recoming down with, some flu for
the flu season covid orsomething like that.
But it's really your body tryingto fight this abscess or this
nodule, this flare that'spopping up on your skin.
Some individuals mightexperience.
Redness, the tenderness, theitching, the aching, and the flu
like symptoms.
Those are sort of like theinternal symptoms that are
(26:14):
experienced.
Ashley (26:16):
We know that there's no cure for HS, but are there
options?
So like if you do end up havinga flare that leaves scars
behind, is it possible to havesurgery to have them removed?
Or would it end up being thatyou would get another flare and
then kind of defeat the purposeof it?
Jasmine (26:34):
Yeah, so there's several different ways to
approach this and it's dependenton how inflamed and severe the
site is so, for me, for anexample, I got CO2 laser and
it's just basically a laserscalpel that is used to cut out
the affected part of my skin andthen to kind of, like, open
those tunnels that are under theskin and then burn them off so
that they don't so you can dothe same thing with a scalpel
(26:56):
surgery as well.
But I did that and the firstthing that I had to do in order
to get to qualify for thatsurgery was actually lowering
the inflammation in my body.
So if I were to get that before,like, while I was still
experiencing, abscesses everyday or every week or something
like that every month, then itwouldn't be a surgery.
That would be extremelybeneficial because there's a
(27:16):
chance that it could reoccur inthat area.
There's deroofing as well, whichthe roofing is just for an
example.
If you have a nodule on yourarmpit, they would just open it
up and allow it to drain andkeep it open and it will close
on its own.
And so it's supposed toessentially stop that site from
having such an inflammatoryresponse.
But sometimes de roofing.
(27:36):
Is not helpful and it can causemore problems because another
abscess can pop up on top ofthat open wound.
It happens so often and that cancreate like webbing and, that
web, like scar tissue and thingsof that nature,
Ashley (27:51):
which again, sounds extremely painful and then
again, healing once the deroofing happens.
Because I think that is anotherthing that my girlfriend has
gone through, where the deroofing can also then, you're
kind of uncomfortable and inpain, and especially when it's
in an armpit, like, it's notlike you can just keep your arm
raised up, that it's reallyrubbing together or having your
(28:12):
clothes be on it, that it can beextremely painful and
uncomfortable.
Jasmine (28:16):
And, you know, too, there are wounds.
So, like, for my CO2 laserprocedure I experienced
something a lot different thansome other people did because my
physician is one of the topphysicians in the country for HS
maybe arguably the world.
And so he had a lot ofinformation about, the surgery
in general, dealing with my,wounds and then also he had a
(28:38):
wound care specialist in theroom who helped me to figure out
how to take care of it.
So it wasn't just left open.
And then I had to put my shirton and I just had this big open
wound on my arm and it shouldn'tbe like that at all.
And if anybody's experiencingthat, I would encourage you to
ask your surgeon or thephysician who's operating on you
(28:59):
to find a wound care specialist.
That you can talk to so you cantalk about what you can do to
take care of the wound to helpthe healing because you
shouldn't be uncomfortable andthat, you know, I've heard
stories of people not having anytype of wound care after they're
like, yeah, they just sent mehome with my wound open and I'm
just like, what, what do youmean, you know?
And it's no fault of theirs, youknow, so that's not me blaming
(29:21):
them, but it's just it's amisstep for the person who is
working on the wound, you know?
My wound care specialist, youknow, I put Vaseline on it and
then I put Telfer and then I putgauze and then I put tape and I
would put a lot of Vaseline onthe wound at first and then I
would taper it off eventually asthe wound closed because
sometimes the Vaseline.
(29:42):
Creates a barrier for the skinso that it can grow.
And I'm probably not explainingthat well, because I don't know
all the science behind it.
But it helps for the wound toclose.
And so over time you reduce theamount of Vaseline so that it
can help for it to, like, closecompletely., there's wound care
procedures that have to happenpost op.
that are helpful.
Ashley (30:02):
Well, thinking about the fact that it attacks the hair
follicles, are there things likelaser hair removal or.
Sugaring or waxing.
That help not have a flare up?
Jasmine (30:14):
So, there are studies that laser hair removal can be
helpful for people dealing withHS.
It helps with inflammationaround the hair follicle, for
sure.
It can help.
More with certain stages thanothers.
So this once again might bebetter for people that have
moderate HS than it is for mildand severe because the in the
(30:35):
later stages of the disease, itmight not be as effective
because of the disease state andthe levels of inflammation.
But when you have mild HS, itmight be more helpful because
there's not that muchinflammation in that area.
Sort of like, you know,interconnected tissue, all these
tunnels and all this other stuffthat's going on.
So, yeah,
Ashley (30:53):
that makes sense.
Is HS something that could betied to genetics?
Jasmine (30:59):
So there's more research that's developing about
this, but from some of theresearch that we have thus far
you know and speakingspecifically from my experience,
I have a cousin on my mom's sidewho has HS.
And so I have H.
S.
So for us, it might be geneticand there's other individuals.
There's another woman that Iknow her family has a just her
brother.
She has it, you know, her fatherhad it.
(31:21):
So it could potentially begenetic.
And then other people mayexperience just getting H.
S.
and no one that they know of intheir family has it.
So, it can potentially betriggered by genetics.
It's important to kind of lookinto the epigenetics and sort of
like study a little bit abouthow certain environmental
factors and triggers can triggerdisease states in our bodies as
(31:42):
well.
Because I think that'll help tokind of like clarify some of
that information to do.
Ashley (31:46):
In some ways, like not that you would hope that your
family has the same condition,but in some ways it also must
make it a little bit easier tobe able to have that.
I don't know, like soundingboard of saying like, this is
what sucked for me, or this iswhat worked for me and really
not feel so isolated, evenwithin your family.
Jasmine (32:05):
Yeah, I would say from my experience, it makes me feel
like oh, it's like that feelingof like, oh, so that's where
that comes from, you know, eventhough we don't know where it
originated after that, but it'sjust a sense of comfort that I
felt like I feel.
When I know that my cousin hasit too.
I wish neither of us had to dealwith it, but there's a greater
(32:28):
sense of community knowing thatI'm not the only one, the
anomaly in my family that'sdealing with this condition.
Ashley (32:35):
If all of the medication that the doctors give you, if
you go down that road, if Youcontinuously take that, or even
if you go like, in the naturalpath route, is there a way to
kind of make it go intoremission?
Or is that something that onceyou're in stage 1, it'll
continuously develop.
Jasmine (32:52):
So so 2 things remission is possible.
Absolutely.
The 2nd thing is that as far aslike the progression of disease,
there's still studies coming outto.
Corroborate whether, you know,if medical intervention during
the mild stage does that preventit from getting to severe, you
know, H.
S.
So I'm not going to speak tothat just because I don't know
(33:16):
all the information, but what Ican speak to is like the
remission aspect of things likeI've gone through remission
myself.
I'm in remission now.
I'll experience some type ofinflammation here and there.
But like, for example, I had anodule that was showing up on my
ear, like right here, and Icould feel it and it was itchy
at the same time as, you know,also being a mass there and it
(33:38):
just went away.
So it didn't burst or anythinglike that, but remission is
definitely possible and it canhappen for individuals.
In various ways, you know, Iexperienced it from like diet,
stress management and those weremy main things and somebody else
might experience it from, youknow, taking a biologic or
(33:58):
getting a certain surgery ortreatment, and then somebody
else might not experience it atall, which is the double edged
sword of dealing withhidradenitis suppurativa.
Ashley (34:06):
I know that you are really open about it, but are
there any questions that youwish that people wouldn't ask
about it or that they wouldn'tbring up?
Jasmine (34:15):
I don't think there are questions that I wouldn't like
anybody to bring up.
I think that sometimes I'venoticed this might be a
projection.
So I don't know if this isreally true, if it's just my
projected idea, but I'vedefinitely experienced people
act weird around me, likesharing things with me because
they know I have HS.
Which is very strange because itmakes it seem like it's
(34:38):
something that they can catch,which it's not, you know and
then it also it's also theassumption that I'm not taking
care of myself to the pointwhere I wouldn't pass it on to
someone else if it wascontagious, but it's not, you
know so that can be that's notmore of like a question.
That's more of like an action ofhow I'm treated.
So if anything, I would just sayfor those who may have lovers,
(35:02):
caregivers, or anything of thatnature that has HS, just be
careful how you react when yousee things, you know what I
mean?
Or when you're experiencingthings with your partner, you
know, if you have a friend,don't make them feel isolated,
don't make them feel like, Oh,because I shared.
A pair of pajama pants that, Oh,you can keep those.
Like, you know what I mean?
Because you think you're goingto get HS, like.
(35:23):
That's ignorant.
You know what I mean?
It's ignorant and it perpetuatesshame and a desire to be, to not
be vulnerable with people that,you know, people with HS need to
be vulnerable with.
Ashley (35:36):
Which is a really important factor too.
And I guess like the flip sideof that is like, then ask me,
ask me if it's contagious, askme about these things, because
obviously you're internalizingthings and then projecting them
on me instead of just saying,you know, is it something that I
could catch?
Just anything that you feelunsure about?
Because yeah, it really doesn'tmatter as far as that goes.
(35:59):
We should be able to be in thesame space and it's not like a
virus in that sense.
Jasmine (36:04):
Exactly.
Yeah.
And I think that any skincondition can make people feel
like ill.
I don't want to come close tothis person because what if I
get it?
Like, that's disgusting.
I don't want to look at it.
Like, you know what I mean?
And everybody's entitled to feelhow they feel and whatnot.
Like, so I'm not trying topolice how people feel, but if
you're a friend of someone whohas a chronic skin condition or
(36:25):
chronic illness in general, youknow Don't be a jerk.
Like, you know what I mean?
If you can't deal withsomething, then exit yourself
out their lives.
You know what I mean?
And just respectfully, you know,it's gonna hurt the person for
sure.
But I just think they're betteroff without you being a jerk to
them.
Because they're dealing withsomething that you couldn't
imagine.
And you think looking at it isbad.
(36:47):
Think about what it feels liketo deal with it every single
day.
You know what I mean?
We have the same reaction.
We got it.
So it's just, you know, let'snot create an environment where
people feel shameful about whatthey're dealing with, especially
if they can't control it.
Ashley (37:01):
Yeah, we really should have more empathy and compassion
for people and be lessjudgmental.
It is one of those things.
If you're somebody who's like,oh my gosh, that looks so bad or
I wouldn't want that.
It's like then remembering.
That other person does havethat.
So it's, it's really, I don'tknow, not being so shallow and
superficial that way too.
Jasmine (37:20):
Yeah, absolutely.
And, you know, like I said,everybody has their preferences
of things, you know, I'm notgoing to get into a deep dive
into, like, everything I'mthinking about, but I just want
to encourage patients to realizethat there is Someone who is
friends.
It doesn't have to be romanticas what you know, because not
everybody wants a romanticrelationship, but for
(37:40):
friendships, even like chosenfamily.
There are people who willsupport you and there are people
who will love you downregardless of what you deal with
who will clean your wounds.
I've had these.
conversations with friends andI've cried with my friends
because of how caring theirpartners are, are how caring
their family is, how caringtheir friends are, you know, so
(38:01):
there are individuals who arelike that.
It might take time.
Once you like weed out thepeople who are not for you to
like develop thoserelationships, but the journey
is worth it.
And it may be lonely at first,you know what I mean?
So I'm not trying to say like,Oh, you're going to feel so much
better.
You are probably going to feelvery bad.
Like, you know what I mean?
It happens because you're goingthrough grief, you know, of,
(38:22):
what you're dealing with, withyour body what it's doing to
your personal life, it affectingyour quality of life, all of
those different things, all thatgrief is going to overwhelm you.
But that's why it's important toget therapists.
That's why it's important tojust trust the process and trust
the journey, no matter howdifficult it gets.
And that I can be complicated,you know, so I'm not saying that
(38:42):
to be passive or flippant.
I'm just saying that to providehope that I was in the worst
space of my life, you know,emotionally, physically,
mentally, spiritually.
And now I'm in the best place Icould possibly be.
And that's because I trustedmyself.
I trusted the process and Ididn't give up.
It feels like sometimes we wantto lay down and if you feel like
(39:04):
you need to lay down for alittle bit, do that.
Going on a journey with HS isabout taking breaks, so if
you're an advocate, and you'rejust like, I don't want to talk
about this anymore.
Take a break from talking aboutit.
If you.
Are having issues withtreatments and things like that.
See if your physician willsupport you and taking a break
from doing treatment for alittle bit so that you can just
regroup, do what is right foryou so that you can feel at
(39:26):
peace and at one with yourexperience and with your body,
but it will take time and it'sworth the journey.
Ashley (39:32):
I really appreciate the fact that you are so open with
this, so that if there issomebody who's maybe on the
beginning of their journey, orlike you said, struggling with
it, that they don't have to feelso isolated.
Because I think the thing withHS would really feel like,
because it isn't necessarilysomething that a lot of people
would suffer from, that youwould kind of feel like it's
(39:53):
just you and that you are byyourself.
And I also think the fantasticthing about being in the era
that we are in.
Like you said, there's 600million eyes on this, on social
media, that you can go onInstagram, that you can go on
TikTok.
Maybe your individual peoplethat are going to get you and
support you, maybe they're notnecessarily at your office or in
(40:17):
your school or in your immediatefamily, that maybe it is sort of
searching out and finding thatcommunity that way that'll make
you feel seen, make you feelheard, and know that There's
nothing actually wrong with youas a human just because you have
this condition.
Jasmine (40:33):
Yeah.
And, you know, social media getsa lot of flack and there are
negatives to social media, butthe positives you know, the
reason why it boomed when it didFacebook is because of the
connection that people made, youknow what I mean?
The connection for meeting withpeople all across the world,
I've met people from India whohave DM me and said, said, your
content has helped me.
(40:53):
Can you help me even more?
Like, you know what I mean?
It's I've gotten so manydifferent individuals from
across the world.
And the same thing can happen toanybody who is living with this
condition and is present online.
And some people, you know, youcan, you can even create a
profile and not post anythingand just follow people so that
you can get information.
You don't have to share yourexperience.
You don't have to be public onsocial media and post.
(41:16):
things, you know, you're notrequired to do any of those
things to be a part of thecommunity.
So don't be afraid to connectwith people online because those
could become some of yourclosest friends.
Ashley (41:26):
I love that.
And I do agree.
You don't have to be bold andout there, but I do love the
fact that this is becoming amore mainstream topic and that I
think a lot of people have HSand don't necessarily know that
that's what it is.
So I do like that.
It's helping people feel likethey don't have to suffer in
(41:46):
silence and that they can bebrave enough to know what to ask
at the dermatologist or knowwhat to ask to the doctor or
have resources available forthat.
Jasmine (41:55):
Yeah, absolutely.
Ashley (41:57):
If anybody is looking for you online, can you let them
know where they can find you?
Jasmine (42:02):
Yeah, absolutely.
So I have platforms on TikTokand also Instagram and Facebook,
and it's who is Ivana on allplatforms.
I believe on TikTok is actually,who is Ivana Espy, because I
think who is Ivana was taken.
So it's W.
H.
O.
I.
S.
I.
V.
A.
N.
N.
A.
And then on TikTok, it's all ofthat, but also adding E, S's and
(42:26):
Sam, P's and Paul Y.
So Espy
Ashley (42:28):
Thank you so much for having this conversation with me
today.
Jasmine (42:31):
Of course.
Thank you so much for being opento spreading awareness.
Like, you know, I'm sure there'ssomebody who listens to your
podcast who might be dealingwith HS.
So I'm very grateful to be inthis position.
Thank you.
Thank you so much for joining ustoday for this episode of the
filled up cup podcast.
(42:52):
Don't forget to hit subscribeand leave a review.
If you like what you hear, youcan also connect with us at
filledupcup.Com.
Thanks again for tuning in andwe'll catch you in the next
episode.
Welcome to the Filled Up Cuppodcast.
We are a different kind of selfcare resource, one that has
nothing to do with bubble bathsand face masks, and everything
to do with rediscoveringyourself.
We bring you real reviews,honest experiences, and
unfiltered opinions that willmake you laugh, cry, and most
(00:21):
importantly, leave you with afilled up cup.
Ashley (00:32):
I am very excited.
I have Jasmine Ivana Espyjoining me today.
She is the founder of thenonprofit, the Association of
Hidradenitis Suppurativa.
Please forgive me if I've saidthat wrong and inflammatory
diseases.
Thank you so much for joining metoday.
Jasmine (00:50):
Of course.
Thank you so much for invitingme.
I'm really excited to talk toyou and share my journey.
Ashley (00:56):
And I do just want to throw out the disclaimer that
neither one of us are medicalprofessionals that we're just
sort of sharing from personalexperience.
For anybody who's not aware, canyou explain what Hidradenitis
Suppurativa is?
And I'm going to refer to it asHS, going forward.
Jasmine (01:14):
Yeah, absolutely.
So Hidradenitis Suppurativa is adebilitating chronic skin
condition also referred to as afollicular occlusion.
Hs consists of painfulreoccurring deep seated
abscesses that may start aspustules, which are small pus
filled bumps, but they can alsogrow to the size of a golf ball
or larger.
The abscesses and lesions ornodules are typically painful
(01:37):
and release.
A very foul smelling puss whenthey burst abscesses can really
develop anywhere on the bodythat there's a hair follicle and
they just don't appear in areasthat skin touches skin sort of
like how some of the reportssay, but they can really show up
anywhere that there is a hairfollicle on the body.
The only place that they can'tshow up there on the palms of
(02:00):
the hands, the soles of thefeet.
Or the red part of the lips.
So I just want to make sure thatpeople are aware of that.
Especially when they'reconsidering seeing a physician
or wanting to see a physician.
There are several differentstages of the condition.
It's typically diagnosed bysymmetrical scarring on both
sides of the body.
So, for example.
(02:21):
Well, if I have HS on this side,it's typically like the nodule,
you sometimes get tracks andscar tissue and open wounds and
drainage.
And then if you see it on thisside of the body, the left side
of the body, you'll see it onthe right side of the body,
either in a different area, orin the same area, for example,
armpits and so it can beextremely debilitating and it
(02:42):
can be very costly to treatbecause.
There are different medications,biologics, treatments, tests,
and things of that nature thatare available to sort of help
patients deal with thesymptomology of HS.
Ashley (02:54):
That does sound like it would be very painful and
potentially, depending on whereit was popping up, maybe
embarrassing at times too.
Jasmine (03:02):
Yeah, absolutely.
I remember, for an example, whenI was in high school and middle
school was like, middle schoolis when I developed it.
I went to a private school andwe had to wear these white
college shirts.
And so I was sitting.
Like two rows before the door.
So it's like on the left handside.
My principal came in to makethis announcement.
(03:23):
And so I had a question.
I raised my hand.
And so my classmate, like, I'moblivious to anything that's
going on.
Right?
So my class classmate is like,Jasmine, your arm is bleeding.
And I'm just like, I look downand I am embarrassed.
And everybody is looking at meand I'm just stunned and I'm
frozen because I'm just like, noone knows what this is.
I haven't explained this toanybody.
(03:45):
And now I have a big blood spotscovering my whole armpit on my
white collar shirt.
And so I was completelydevastated.
And I was just like, can I go tothe bathroom?
And I just rushed into thebathroom.
I called my mom and I wish shewould have handled the situation
a little bit better.
But, you know, she told mebasically, because I had this
condition to make sure I bringlike an extra shirt with me, but
(04:08):
I didn't this day, and so shewas kind of upset with me that I
didn't, but, being a childdealing with something like
this, I've never dealt with achronic illness.
So I love my mom and she is mysupporter and she still is and
always has been, but that was amoment where I was just like,
okay, I really would have wantedfor you to say something else to
me in a moment where I wasembarrassed in front of my whole
class and teachers and studentsand the principal, like, you
(04:31):
know, so when we talk aboutembarrassing moments, H.
S.
definitely, that was one of themost pivotal ones that kind of
like affected me as a child.
Ashley (04:40):
Well, and especially those middle school and high
school years, everything seemslike, life or death, like your
feelings and emotions are soheightened as it is that.
I could see how it would belike, don't ask me if I have
another shirt, like just fixthis in this moment.
Jasmine (04:57):
Yeah, exactly.
I just wanted to really be heldin that moment and told that
everything would be okay.
Even though I felt like, and Ididn't know if anything would be
okay.
There were no real treatmentsback in that time when I had H.
S.
I didn't have a physician whocould help me to deal with the
symptoms.
They were pumping me full ofantibiotics and that wasn't
(05:17):
helping at all.
I put in a myosin and rifampinand I was like, okay, you know,
this isn't helping at all.
And I'm still getting, H.
S.
abscesses and I still have openwounds and scar tissue, you
know, so it's tough.
It's tough at any age, butespecially as a child, they can
really alter your brainchemistry for sure.
Absolutely.
Ashley (05:36):
When somebody thinks that they might have HS now,
would they go to their regularGP?
Would they go talk to adermatologist?
Like how is the actually gettingdiagnosed part.
Jasmine (05:48):
Yeah, so this can be a bit tricky because not a lot of
physicians know aboutHidradenitis suppurativa across
all practices or disciplines itcan be difficult to get a proper
diagnosis depending on whatstage you have it can present as
different conditions.
For an example, if you haveCrohn's disease, Crohn's disease
also comes with lesions that arevery much similar to
(06:10):
Hidradenitis Suppurativa.
Some people have had it mistakenas herpes, because they have the
smaller nodules and lumps,which, you know, HS is not a
contagious condition.
And there's nothing wrong withhaving herpes or anything of
that nature, but it's good todifferentiate the two when
talking about.
Symptomology and then also likethe definition of disease and
(06:31):
presentation.
So when somebody suspects thatthey have HS, it's always
recommended to see a specialist.
I want to give a shout out tothe Hidradenitis Suppurativa
Foundation because they have anarchive of different.
Physicians that you canbasically go on their website
and look at a map and get a listof these different physicians
(06:53):
that could potentially be nearyou or in your area.
So if you don't have access tosomeone like that, and they're
not close, I would definitely goto see your PCP and ask and talk
to them and say, hey, I think Ihave this condition.
Can you look more into this?
Ask your colleagues about thiscondition to see if I can be
(07:14):
diagnosed with this and if I canstart a course of treatment, I
think that's the best way toapproach it.
Ashley (07:19):
What kind of treatment options are available?
Jasmine (07:21):
So typically when it comes to treatment, the first
round of treatment, depending onwhat stage you're in, is
antibiotics.
So they'll start you onrifampin.
Clindamycin or some otherantibiotic medication.
And they'll start differentcourses of that medication at
different strength depending onthe severity of the disease.
And when you think aboutantibiotics, people
(07:42):
automatically think, okay, sothere's a bacterial infection,
but antibiotics are also, atstage 1, for example, and
sometimes stage 2, but notreally, it's more like stage 1
HS, which is like moderate.
It can help with inflammation.
So that's why they prescribe theantibiotics is because of it
helps to lower that inflammatoryresponse.
(08:03):
So that's usually the typical.
First round of treatment, andthen there's also depending on
how your H.
S.
is triggered.
You might go into hormonetherapies, women with periods or
people with periods mayexperience an influx of nodules
abscesses, scar tissue drainagearound their cycle.
(08:23):
So if that's the case, theremight be a hormone imbalance.
And so there's hormone teststhat patients or people who may
have a HS or have HS can take tosee what.
Hormones, they may need tosupplement in order to get that
balance back to where it needsto needs to be.
There's also biologics and otherinjections.
(08:44):
For an example, for biologics,there's Humira, which is FDA
approved, and Cosentyx just gotFDA approved as well for
Hidradenitis Suppurativa, whichis amazing.
Humira is targeting the TNFalpha gene, and then Cosentyx
actually targets a differentinflammatory response.
So there are two differentbiologics and they help with two
very different things, but theyboth can be helpful for HS,
(09:06):
depending on who you are andthings of that nature.
Ashley (09:10):
Other than say hormones, are there any other triggers
that are commonly seen or issomething that you've found for
yourself that will bring on anoutbreak?
Jasmine (09:20):
Yeah, that's a great question.
So typically HS So, I'll say itlike this.
Everybody's triggereddifferently by HS.
So, if you think about HSpatients, think of like
snowflakes.
No snowflake is the same,apparently, you know what I
mean?
So I definitely think it's thesame thing for HS patients.
So, it presents differently ineverybody, and we don't know
(09:40):
every single trigger, but someof the triggers that we are
aware of are some people mighthave reactions to certain foods.
Some people might have reactionsto hormonal imbalance, stress
can also be a trigger.
There's also emotional triggersthat there isn't a lot of
science behind the emotionaltriggers, but I have talked to
patients who have said thatafter a traumatic experience
(10:01):
with their bodies or anexperience that has kind of like
altered them in some way thatthey started experiencing H.
S.
So there are so many differentfactors that are involved that
they're not exactly sure what,but it's important to pay
attention to your body.
So like, if you're stressed outand you notice that you didn't
have a nodule, then stress mightbe the trigger.
You know, if you eat dairy andyou notice that you have a
(10:22):
nodule, you're experiencing moredrainage, then dairy might be
the trigger, but it could beneither of those things as well,
but it's always important tolisten to your body and to
connect the dots as much as youcan.
Ashley (10:32):
That must be really frustrating listening to
yourself, checking in withyourself and thinking, okay,
stress is my trigger, so I'mgoing to do everything I can and
then for that not to be the casethat it must be really
frustrating and kind of feellike there isn't a lot of
answers out there or that youare kind of, I don't know, like
stuck by yourself trying tofigure it out.
Jasmine (10:52):
Yeah, I can feel like that for sure.
I know that I can speak to myown journey like.
At first, I thought diet was mything, and I went on this whole
diet change a decade ago.
I was 350 pounds.
So similar to the same size thatI am now again.
And I lost over 150.
I got to like 180 pounds.
I was eating AIP vegan.
(11:14):
Then I started incorporatingmore like fish into my diet.
And so I noticed that my HS gotbetter and there was one
specific moment during this timewhere all of the lesions under
my breasts and on my chest justcompletely healed up with no
medical intervention at all.
And so other areas of my bodydefinitely did not heal, but.
(11:34):
I didn't have as many abscessesshowing up in those areas.
And then the lesions in mybreast just kind of just
disappeared, which was amazing.
So I guess what I'm trying tosay is that I thought that that
was the trigger at that point.
And then later on, stressstarted to affect.
My HS and like the presentationof my condition and then it was
(11:55):
hormones.
Our bodies changed so much thatthe trigger for HS can change as
well.
So really dealing with HS isabout being vigilant and patient
enough to listen to your bodybecause your body is not against
you.
It's communicating with you.
And so once I started realizingthat, like, That it's not trying
to do this on purpose to attackme.
(12:16):
It's really trying to tell me,hey, something's wrong and we
need help.
The issue with HS is, is thateven though we do have treatment
options, not all of them areeffective.
So somebody might go, you know,and try all the treatments and
they're still dealing withsevere HS.
And so it can be infuriatingbecause it's like, what is going
to work for me?
It's a very complex conditionand it.
(12:38):
shapes and changes and I'veexperienced it myself, you know,
Ashley (12:43):
it must be really frustrating to you because with
anything of not knowing thecause of it, the expense that
comes through trying differentmedications or trying different
diets or lifestyle things thatall of it can seem really
frustrating when you're puttingthe money out and then not
seeing the return in the sameway.
I can only imagine for stress,like there's no way to 100
(13:05):
percent avoid stress completely.
And I almost feel like if you'retrying to avoid it, then it
makes it bigger in a way that itwould be really hard for people
when that's their trigger.
Jasmine (13:16):
Yeah, of course.
And I want to kind of likerephrase what I said, because
avoiding stress is not I'm not Idon't mean that in like this
toxic positivity type of likementality, because sometimes it
can be interpreted as that,like, ignore your stress and
it'll go away.
It's not like that at all.
I guess one example I can.
Provide is that I had mygirlfriends came into town and
(13:38):
this was when I had a reallyrestrictive diet.
I had a sip of sangria and thenthe next day I had a nodule in
the back of my leg.
I don't know if that was becauseof the sangria.
All I know is that, you know,after A, B happened, you know so
that wound was.
Open for a year.
It would not close.
It would close and open.
Close and open everything.
Not really that much drainage,but it would just be a hole on
(14:00):
my leg.
And so during that time, I had avery stressful job.
And a year after that, I gotfired from my job.
And so a week after gettingfired.
The wound in the back of my legjust completely healed up
because I was no longer in astressful situation and I was
actually in a position where Iwas able to do a lot of the work
that I'm doing now full time,which was my passion.
(14:22):
So I was following what I hadthe desire to do.
So even though I'm stillstressed, like, you know what I
mean, but I'm not stressed in away that I was stressed at that
job, if that makes sense.
I hope that clarifies thatbecause I definitely think that
I still deal with stressfulsituations for sure.
But I definitely thinkmitigating stress is depending
on like, what is this thing?
(14:42):
Like, is it causing anxiety inyour body?
Like, you know what I mean?
Are you feeling depleted?
Are you feeling like you're notcompleting your purpose in life,
you know, things of that nature.
I'm not saying that that's theHS either, but some of those
things.
help to reduce stress and putyou on a path where some of the
treatments might help and younever know.
You might be surprised at whatyour body does.
Ashley (15:03):
Have you found that there's certain products that
help?
Like, when you're talking aboutthings seeping and having
nodules that aren't healingproperly, are there things that
you found for you personallythat work better than others?
Jasmine (15:17):
Yeah.
So there are so many differentproducts that are available for
HS patients.
I mentioned some of themedications but when we're
thinking about sort of likenaturopathic or holistic care or
just topical I want to give ashout out to my magic healer.
If you're listening to this andyou want to try out my magic
healer, I actually have a codewith them.
It's Jasmine 10 J.
(15:38):
S.
M.
I.
N.
E.
and that's the number 10.
And my magic healer is an allnatural product.
That has had proven results inthe community.
So they have on their site.
A lot of before and afters ofusing.
These products and things ofthat nature.
So that's a really good product.
Clean skin is also another oneas well.
It's a wash and there wasactually a study conducted by
(16:00):
clean skin and HS connect, whichis another patient organization
that basically took the the washand.
They did a study where theywould dab a little bit of the
wash on the wound and then theywould let it dry out and it
helped with some of the itchingand some of the other
symptomology that's associatedwith HS as well.
(16:22):
So I definitely would say mymagic healer and clean skin and
then there's also clean andcute, which is a soap that is
made for people withinflammatory skin conditions.
And they've been popular in theH.
S.
community as well.
And so those are a few of theproducts that I typically
recommend when thinking about,you know, how can we like,
(16:43):
naturally take care of ourbodies, but, some of the
medications that I mentioned canalso be helpful depending on,
what your physician may think isbest And also, you know, even
with that I want people to knowthat dealing with chronic skin
conditions should be a give andtake.
So you should also have a say inwhat you do and don't want to
do.
If somebody pressures you intodoing something, they might not
(17:05):
be the doctor for you.
You might need to Move on andfind somebody else because you
don't have to do anything.
You are not comfortable with andthat's that's going to create
more stress and that's going tobe counterintuitive to what
you're trying to do, especiallywith the treatment,
Ashley (17:19):
which is a really good point because not all providers
are the same and it really iswhatever condition that you're
dealing with or any healthrelated things.
You do want to make sure thatthe doctor is advocating with
you and that you don't feel likethey're only selling you one
side.
That it is really important tokind of Seek out, which is why
(17:40):
it's also really great havingthe association.
Like you said that there areother service providers listed
there to be able to feelconfident in reaching out to
somebody else.
Jasmine (17:50):
Yeah, absolutely.
There's such a large communityof H.
S.
advocates, patients, peopleliving with HS, and it's
continuously growing everysingle day.
We're exponentially larger, foran example, on TikTok.
If you search the hashtag,there's over 600 million views
on Hidradenitis Suppurativaalone.
And so when you combine, andthere's several hashtags, if you
(18:13):
combine all the viewership.
On all the hashtags, it's over abillion views.
So there are a lot of people whohave eyes on Hidradenitis
Suppurativa right now.
And so that means that there area lot more voices speaking up.
Not every single source iscredible and that's no shade to
anyone, but that's just what itis.
Not everyone is as knowledgeableas they could be, and that's no
fault of their own.
That's just because of thenature of the condition and the
(18:35):
misinformation that's floatingaround.
But I do want to encouragepeople to reach out and to
connect with people onlinebecause I've met people online
that are my friends in reallife, you know, I hang out with
them.
I just had a person that I metonline who cooked for me and her
husband a few weeks ago.
So, you know, you can reallymake relationships that last.
(18:56):
And then sometimes, you know,when you come out and talk about
your experience, somebody elsethat's close to you might say,
Hey, I have that too, but Ididn't know what it was called
and I didn't really take itseriously, or I just kind of
like dealt with it, you know, soyou don't know what type of
community you might create byspeaking about your experience.
And then also just likeinserting yourself into the
communities that already exist.
Ashley (19:17):
I love that.
I also think that's a reallygood point that a lot of times
people will have something andthey'll be like, I don't want to
go to a doctor, or I don't wantto bother anybody, or I'm sure
that it's just something that'llgo away that they really don't
consider that it actually couldbe a condition and that they
should seek help.
Jasmine (19:37):
Yeah, yeah, and it can be a lot of that is I want to
empathize with individuals whofeel that way, because dealing
with HS, especially depending onwhere it shows up can be
embarrassing and it can be like,you know, I don't want a doctor
to see my body looking likethis, and that can be a
deterrent for going to see aphysician or talking to anybody
(19:58):
about it because it's like, youknow, you might think you're
nasty, disgusting, but that'sthe opposite of the truth.
Once again, the body iscommunicating something and it
just needs assistance.
It needs help.
It needs all the love that youcould possibly give.
And I know that can be difficultsometimes, but going to the
doctor is.
Better than not going and tryingto figure out things on your
own, like shooting in the dark.
And some people will argue medown about that.
(20:20):
But I definitely think thatbecause I've benefited from both
holistic and Western medicine, Ithink that both have their place
and that it's important to dowhat resonates with you.
And to follow whatever pathresonates with you, but I always
encourage people to go see adoctor, even if you feel
embarrassed, even if you feellike somebody is not going to
(20:40):
give you the care that you need,that is a step in the right
direction.
And once you figure out whetherthat person can help you or not,
then you can either redirect, oryou can move forward.
Ashley (20:51):
Absolutely.
How has it been sort ofbroaching the subject with other
people?
Like if you are dating somebodyor do you mention it to friends
that if they say something aboutit, it's that's what it is.
Jasmine (21:06):
Yeah, so I'm very open about my experiences now and the
people who follow me, my friendssee my HS content.
So I don't have any issues withthat.
I haven't lost any friendshipsthat I know of because of my
Hidradenitis Suppurativa I mighthave, I don't know, but you
know, we all have friends.
Ashley (21:22):
You wouldn't want them anyways, if you did, like what
an awful reason to.
Jasmine (21:26):
Exactly.
You know, some people don't likedealing with people with
disabilities and chronicillnesses because it's drag,
whatever.
And it's just like, okay, well,you're not my friend and that's
fine.
There might be this grievingprocess that we go through, but,
you know, that's a part of life.
But as far as dating goes Istill have fears around.
My HS and dating because I'venever really had a substantial
(21:49):
relationship like a realromantic relationship.
So, there's fear still aroundfor me on whether somebody will
accept it or not.
So even though I haven'tnecessarily had negative
experiences.
Honestly, I just definitely havenot been open enough to trust
somebody to reveal somethinglike that.
(22:09):
I think the last person that Iwas sort of like intimate with
they followed my Instagram.
So they asked questions aboutit, but they didn't stop talking
to me because of the condition,and I'm not afraid to talk about
my experience or anything likethat.
But I have so many people aroundme who have been in successful
relationships along with beingHS.
(22:30):
I also have people who are in mycircle who are married and happy
marriages for long periods oftime.
Some of them just got married,you know, and then some people
have experienced, beingseparated from partners because
they developed HS.
It's really about thatindividual's capacity to be able
to support someone who has achronic disease and just like in
friendships where it's like.
(22:51):
It's not your fault ifsomebody's like, I can't deal
with this.
It's the same thing withromantic relationships.
And that doesn't mean that youwon't go through grief.
It doesn't mean that it won'thurt.
It just means that there's sortof a clearing that's happening
in your life.
So it's like, okay, that personis not going to support me.
That person's not going to loveme the way that I need to be
loved.
So good riddance, you know?
(23:11):
So it can be complicated forsome people.
But not everybody experiencesthose complications and not
everybody's going to reject youbecause you have HS.
Ashley (23:19):
I have a girlfriend who has it and she has found
sometimes it can make a bedroomactivities.
It's a little bit harder justbecause, when you do have a
wound and it is open, it's notsomething that's comfortable or
she'll get I'm not sure whatmedication it is, but
essentially they'll inject it inthe root to make the nodule go
away that it at times, yeah,that at times it can kind of
(23:43):
make it, I think so, justpainful and uncomfortable.
Yeah, again, with the rightperson, it makes it all work,
but I know that that's somethingthat at times can be an
insecurity of hers.
Jasmine (23:55):
Yeah, absolutely.
Intimacy and H.
S.
It's difficult to navigate andactually, we just did my
nonprofit H.
S.
or acid just did a,collaboration with Tonal Health,
which is a telehealth platformalong with Dr.
Erin Martinez Jasmine Young, andher partner, Kenneth Blue, and
(24:16):
so we have part two coming up,actually, to talk about some of
these things, you know, how doyou deal with intimacy when you
have a chronically ill body?
How do you explore yoursexuality with your partner or
by yourself and things of thatnature?
Because it's important, you knowChronically ill people, disabled
people have sex, you know what Imean?
So it's important to know how tonavigate that and what to say
(24:39):
where to tell people to touchand where to tell people not to
touch having all of thatlanguage and understanding is
empowering, you know, it mightbe awkward at first because
they're still trying to figureout like, what do I like?
Don't I like, you know but it'sa learning process just like
anything else.
And I think HS provides us theopportunity to be really, really
conscious about that.
Ashley (24:59):
Which I guess like a blessing and a curse.
I guess like the blessing of itis that it does make you more
aware of your body and moreaware of, what you like and what
you don't like.
Even if some of the places thatyou want to be touched may
change depending on if there isa current is outbreak the right
way of saying it?
Jasmine (25:17):
I would say abscess or flare.
We call them flares.
Ashley (25:20):
Flares.
Are there any other likeinternal symptoms that come with
this disorder?
Like pain within the body orother things similar to that?
Jasmine (25:29):
Yes, that's a good question.
So, some individuals mightexperience, like, pain in the
site that the flare mighthappen.
So, for example, if you have itin your armpit, you might
experience, like, you know,intense itching or redness or
tenderness in the area and thenthe next day or the next couple
of days, you might.
You end up seeing a nodule thereyou might experience flu like
(25:52):
symptoms.
So it might seem like, you'recoming down with, some flu for
the flu season covid orsomething like that.
But it's really your body tryingto fight this abscess or this
nodule, this flare that'spopping up on your skin.
Some individuals mightexperience.
Redness, the tenderness, theitching, the aching, and the flu
like symptoms.
Those are sort of like theinternal symptoms that are
(26:14):
experienced.
Ashley (26:16):
We know that there's no cure for HS, but are there
options?
So like if you do end up havinga flare that leaves scars
behind, is it possible to havesurgery to have them removed?
Or would it end up being thatyou would get another flare and
then kind of defeat the purposeof it?
Jasmine (26:34):
Yeah, so there's several different ways to
approach this and it's dependenton how inflamed and severe the
site is so, for me, for anexample, I got CO2 laser and
it's just basically a laserscalpel that is used to cut out
the affected part of my skin andthen to kind of, like, open
those tunnels that are under theskin and then burn them off so
that they don't so you can dothe same thing with a scalpel
(26:56):
surgery as well.
But I did that and the firstthing that I had to do in order
to get to qualify for thatsurgery was actually lowering
the inflammation in my body.
So if I were to get that before,like, while I was still
experiencing, abscesses everyday or every week or something
like that every month, then itwouldn't be a surgery.
That would be extremelybeneficial because there's a
(27:16):
chance that it could reoccur inthat area.
There's deroofing as well, whichthe roofing is just for an
example.
If you have a nodule on yourarmpit, they would just open it
up and allow it to drain andkeep it open and it will close
on its own.
And so it's supposed toessentially stop that site from
having such an inflammatoryresponse.
But sometimes de roofing.
(27:36):
Is not helpful and it can causemore problems because another
abscess can pop up on top ofthat open wound.
It happens so often and that cancreate like webbing and, that
web, like scar tissue and thingsof that nature,
Ashley (27:51):
which again, sounds extremely painful and then
again, healing once the deroofing happens.
Because I think that is anotherthing that my girlfriend has
gone through, where the deroofing can also then, you're
kind of uncomfortable and inpain, and especially when it's
in an armpit, like, it's notlike you can just keep your arm
raised up, that it's reallyrubbing together or having your
(28:12):
clothes be on it, that it can beextremely painful and
uncomfortable.
Jasmine (28:16):
And, you know, too, there are wounds.
So, like, for my CO2 laserprocedure I experienced
something a lot different thansome other people did because my
physician is one of the topphysicians in the country for HS
maybe arguably the world.
And so he had a lot ofinformation about, the surgery
in general, dealing with my,wounds and then also he had a
(28:38):
wound care specialist in theroom who helped me to figure out
how to take care of it.
So it wasn't just left open.
And then I had to put my shirton and I just had this big open
wound on my arm and it shouldn'tbe like that at all.
And if anybody's experiencingthat, I would encourage you to
ask your surgeon or thephysician who's operating on you
(28:59):
to find a wound care specialist.
That you can talk to so you cantalk about what you can do to
take care of the wound to helpthe healing because you
shouldn't be uncomfortable andthat, you know, I've heard
stories of people not having anytype of wound care after they're
like, yeah, they just sent mehome with my wound open and I'm
just like, what, what do youmean, you know?
And it's no fault of theirs, youknow, so that's not me blaming
(29:21):
them, but it's just it's amisstep for the person who is
working on the wound, you know?
My wound care specialist, youknow, I put Vaseline on it and
then I put Telfer and then I putgauze and then I put tape and I
would put a lot of Vaseline onthe wound at first and then I
would taper it off eventually asthe wound closed because
sometimes the Vaseline.
(29:42):
Creates a barrier for the skinso that it can grow.
And I'm probably not explainingthat well, because I don't know
all the science behind it.
But it helps for the wound toclose.
And so over time you reduce theamount of Vaseline so that it
can help for it to, like, closecompletely., there's wound care
procedures that have to happenpost op.
that are helpful.
Ashley (30:02):
Well, thinking about the fact that it attacks the hair
follicles, are there things likelaser hair removal or.
Sugaring or waxing.
That help not have a flare up?
Jasmine (30:14):
So, there are studies that laser hair removal can be
helpful for people dealing withHS.
It helps with inflammationaround the hair follicle, for
sure.
It can help.
More with certain stages thanothers.
So this once again might bebetter for people that have
moderate HS than it is for mildand severe because the in the
(30:35):
later stages of the disease, itmight not be as effective
because of the disease state andthe levels of inflammation.
But when you have mild HS, itmight be more helpful because
there's not that muchinflammation in that area.
Sort of like, you know,interconnected tissue, all these
tunnels and all this other stuffthat's going on.
So, yeah,
Ashley (30:53):
that makes sense.
Is HS something that could betied to genetics?
Jasmine (30:59):
So there's more research that's developing about
this, but from some of theresearch that we have thus far
you know and speakingspecifically from my experience,
I have a cousin on my mom's sidewho has HS.
And so I have H.
S.
So for us, it might be geneticand there's other individuals.
There's another woman that Iknow her family has a just her
brother.
She has it, you know, her fatherhad it.
(31:21):
So it could potentially begenetic.
And then other people mayexperience just getting H.
S.
and no one that they know of intheir family has it.
So, it can potentially betriggered by genetics.
It's important to kind of lookinto the epigenetics and sort of
like study a little bit abouthow certain environmental
factors and triggers can triggerdisease states in our bodies as
(31:42):
well.
Because I think that'll help tokind of like clarify some of
that information to do.
Ashley (31:46):
In some ways, like not that you would hope that your
family has the same condition,but in some ways it also must
make it a little bit easier tobe able to have that.
I don't know, like soundingboard of saying like, this is
what sucked for me, or this iswhat worked for me and really
not feel so isolated, evenwithin your family.
Jasmine (32:05):
Yeah, I would say from my experience, it makes me feel
like oh, it's like that feelingof like, oh, so that's where
that comes from, you know, eventhough we don't know where it
originated after that, but it'sjust a sense of comfort that I
felt like I feel.
When I know that my cousin hasit too.
I wish neither of us had to dealwith it, but there's a greater
(32:28):
sense of community knowing thatI'm not the only one, the
anomaly in my family that'sdealing with this condition.
Ashley (32:35):
If all of the medication that the doctors give you, if
you go down that road, if Youcontinuously take that, or even
if you go like, in the naturalpath route, is there a way to
kind of make it go intoremission?
Or is that something that onceyou're in stage 1, it'll
continuously develop.
Jasmine (32:52):
So so 2 things remission is possible.
Absolutely.
The 2nd thing is that as far aslike the progression of disease,
there's still studies coming outto.
Corroborate whether, you know,if medical intervention during
the mild stage does that preventit from getting to severe, you
know, H.
S.
So I'm not going to speak tothat just because I don't know
(33:16):
all the information, but what Ican speak to is like the
remission aspect of things likeI've gone through remission
myself.
I'm in remission now.
I'll experience some type ofinflammation here and there.
But like, for example, I had anodule that was showing up on my
ear, like right here, and Icould feel it and it was itchy
at the same time as, you know,also being a mass there and it
(33:38):
just went away.
So it didn't burst or anythinglike that, but remission is
definitely possible and it canhappen for individuals.
In various ways, you know, Iexperienced it from like diet,
stress management and those weremy main things and somebody else
might experience it from, youknow, taking a biologic or
(33:58):
getting a certain surgery ortreatment, and then somebody
else might not experience it atall, which is the double edged
sword of dealing withhidradenitis suppurativa.
Ashley (34:06):
I know that you are really open about it, but are
there any questions that youwish that people wouldn't ask
about it or that they wouldn'tbring up?
Jasmine (34:15):
I don't think there are questions that I wouldn't like
anybody to bring up.
I think that sometimes I'venoticed this might be a
projection.
So I don't know if this isreally true, if it's just my
projected idea, but I'vedefinitely experienced people
act weird around me, likesharing things with me because
they know I have HS.
Which is very strange because itmakes it seem like it's
(34:38):
something that they can catch,which it's not, you know and
then it also it's also theassumption that I'm not taking
care of myself to the pointwhere I wouldn't pass it on to
someone else if it wascontagious, but it's not, you
know so that can be that's notmore of like a question.
That's more of like an action ofhow I'm treated.
So if anything, I would just sayfor those who may have lovers,
(35:02):
caregivers, or anything of thatnature that has HS, just be
careful how you react when yousee things, you know what I
mean?
Or when you're experiencingthings with your partner, you
know, if you have a friend,don't make them feel isolated,
don't make them feel like, Oh,because I shared.
A pair of pajama pants that, Oh,you can keep those.
Like, you know what I mean?
Because you think you're goingto get HS, like.
(35:23):
That's ignorant.
You know what I mean?
It's ignorant and it perpetuatesshame and a desire to be, to not
be vulnerable with people that,you know, people with HS need to
be vulnerable with.
Ashley (35:36):
Which is a really important factor too.
And I guess like the flip sideof that is like, then ask me,
ask me if it's contagious, askme about these things, because
obviously you're internalizingthings and then projecting them
on me instead of just saying,you know, is it something that I
could catch?
Just anything that you feelunsure about?
Because yeah, it really doesn'tmatter as far as that goes.
(35:59):
We should be able to be in thesame space and it's not like a
virus in that sense.
Jasmine (36:04):
Exactly.
Yeah.
And I think that any skincondition can make people feel
like ill.
I don't want to come close tothis person because what if I
get it?
Like, that's disgusting.
I don't want to look at it.
Like, you know what I mean?
And everybody's entitled to feelhow they feel and whatnot.
Like, so I'm not trying topolice how people feel, but if
you're a friend of someone whohas a chronic skin condition or
(36:25):
chronic illness in general, youknow Don't be a jerk.
Like, you know what I mean?
If you can't deal withsomething, then exit yourself
out their lives.
You know what I mean?
And just respectfully, you know,it's gonna hurt the person for
sure.
But I just think they're betteroff without you being a jerk to
them.
Because they're dealing withsomething that you couldn't
imagine.
And you think looking at it isbad.
(36:47):
Think about what it feels liketo deal with it every single
day.
You know what I mean?
We have the same reaction.
We got it.
So it's just, you know, let'snot create an environment where
people feel shameful about whatthey're dealing with, especially
if they can't control it.
Ashley (37:01):
Yeah, we really should have more empathy and compassion
for people and be lessjudgmental.
It is one of those things.
If you're somebody who's like,oh my gosh, that looks so bad or
I wouldn't want that.
It's like then remembering.
That other person does havethat.
So it's, it's really, I don'tknow, not being so shallow and
superficial that way too.
Jasmine (37:20):
Yeah, absolutely.
And, you know, like I said,everybody has their preferences
of things, you know, I'm notgoing to get into a deep dive
into, like, everything I'mthinking about, but I just want
to encourage patients to realizethat there is Someone who is
friends.
It doesn't have to be romanticas what you know, because not
everybody wants a romanticrelationship, but for
(37:40):
friendships, even like chosenfamily.
There are people who willsupport you and there are people
who will love you downregardless of what you deal with
who will clean your wounds.
I've had these.
conversations with friends andI've cried with my friends
because of how caring theirpartners are, are how caring
their family is, how caringtheir friends are, you know, so
(38:01):
there are individuals who arelike that.
It might take time.
Once you like weed out thepeople who are not for you to
like develop thoserelationships, but the journey
is worth it.
And it may be lonely at first,you know what I mean?
So I'm not trying to say like,Oh, you're going to feel so much
better.
You are probably going to feelvery bad.
Like, you know what I mean?
It happens because you're goingthrough grief, you know, of,
(38:22):
what you're dealing with, withyour body what it's doing to
your personal life, it affectingyour quality of life, all of
those different things, all thatgrief is going to overwhelm you.
But that's why it's important toget therapists.
That's why it's important tojust trust the process and trust
the journey, no matter howdifficult it gets.
And that I can be complicated,you know, so I'm not saying that
(38:42):
to be passive or flippant.
I'm just saying that to providehope that I was in the worst
space of my life, you know,emotionally, physically,
mentally, spiritually.
And now I'm in the best place Icould possibly be.
And that's because I trustedmyself.
I trusted the process and Ididn't give up.
It feels like sometimes we wantto lay down and if you feel like
(39:04):
you need to lay down for alittle bit, do that.
Going on a journey with HS isabout taking breaks, so if
you're an advocate, and you'rejust like, I don't want to talk
about this anymore.
Take a break from talking aboutit.
If you.
Are having issues withtreatments and things like that.
See if your physician willsupport you and taking a break
from doing treatment for alittle bit so that you can just
regroup, do what is right foryou so that you can feel at
(39:26):
peace and at one with yourexperience and with your body,
but it will take time and it'sworth the journey.
Ashley (39:32):
I really appreciate the fact that you are so open with
this, so that if there issomebody who's maybe on the
beginning of their journey, orlike you said, struggling with
it, that they don't have to feelso isolated.
Because I think the thing withHS would really feel like,
because it isn't necessarilysomething that a lot of people
would suffer from, that youwould kind of feel like it's
(39:53):
just you and that you are byyourself.
And I also think the fantasticthing about being in the era
that we are in.
Like you said, there's 600million eyes on this, on social
media, that you can go onInstagram, that you can go on
TikTok.
Maybe your individual peoplethat are going to get you and
support you, maybe they're notnecessarily at your office or in
(40:17):
your school or in your immediatefamily, that maybe it is sort of
searching out and finding thatcommunity that way that'll make
you feel seen, make you feelheard, and know that There's
nothing actually wrong with youas a human just because you have
this condition.
Jasmine (40:33):
Yeah.
And, you know, social media getsa lot of flack and there are
negatives to social media, butthe positives you know, the
reason why it boomed when it didFacebook is because of the
connection that people made, youknow what I mean?
The connection for meeting withpeople all across the world,
I've met people from India whohave DM me and said, said, your
content has helped me.
(40:53):
Can you help me even more?
Like, you know what I mean?
It's I've gotten so manydifferent individuals from
across the world.
And the same thing can happen toanybody who is living with this
condition and is present online.
And some people, you know, youcan, you can even create a
profile and not post anythingand just follow people so that
you can get information.
You don't have to share yourexperience.
You don't have to be public onsocial media and post.
(41:16):
things, you know, you're notrequired to do any of those
things to be a part of thecommunity.
So don't be afraid to connectwith people online because those
could become some of yourclosest friends.
Ashley (41:26):
I love that.
And I do agree.
You don't have to be bold andout there, but I do love the
fact that this is becoming amore mainstream topic and that I
think a lot of people have HSand don't necessarily know that
that's what it is.
So I do like that.
It's helping people feel likethey don't have to suffer in
(41:46):
silence and that they can bebrave enough to know what to ask
at the dermatologist or knowwhat to ask to the doctor or
have resources available forthat.
Jasmine (41:55):
Yeah, absolutely.
Ashley (41:57):
If anybody is looking for you online, can you let them
know where they can find you?
Jasmine (42:02):
Yeah, absolutely.
So I have platforms on TikTokand also Instagram and Facebook,
and it's who is Ivana on allplatforms.
I believe on TikTok is actually,who is Ivana Espy, because I
think who is Ivana was taken.
So it's W.
H.
O.
I.
S.
I.
V.
A.
N.
N.
A.
And then on TikTok, it's all ofthat, but also adding E, S's and
(42:26):
Sam, P's and Paul Y.
So Espy
Ashley (42:28):
Thank you so much for having this conversation with me
today.
Jasmine (42:31):
Of course.
Thank you so much for being opento spreading awareness.
Like, you know, I'm sure there'ssomebody who listens to your
podcast who might be dealingwith HS.
So I'm very grateful to be inthis position.
Thank you.
Thank you so much for joining ustoday for this episode of the
filled up cup podcast.
(42:52):
Don't forget to hit subscribeand leave a review.
If you like what you hear, youcan also connect with us at
filledupcup.Com.
Thanks again for tuning in andwe'll catch you in the next
episode.
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