February 10, 2025 • 34 mins
From the heart-wrenching journey of a mother's advocacy to the personal battles with chronic illness, Stacey Haynes's story promises to move and inspire you. We sat down with Stacey, a leading voice in the chronic illness community, to explore her transformative path—from her daughter Iris’s diagnosis of Crohn's disease at a young age to Stacey's own diagnosis of thyroid cancer. Stacey opens up about how these experiences led her to work with Rare Patient Voice, an organization that connects patients and caregivers with valuable research opportunities. Her story highlights the significance of community support, both online and offline, and underscores the resilience required to navigate ongoing health challenges.
As we shift our focus to the complex landscape of medical challenges, Stacey bravely shares her experience with thyroid cancer, from the initial diagnosis to the ongoing recovery process. She reflects on the vital role her empathetic family played during her journey. Stacey also talks about the challenges of managing health transitions like perimenopause, providing a candid look at the medical appointments and adjustments that come with it. This conversation also explores how Rare Patient Voice empowers patients and caregivers by facilitating meaningful connections with medical research, highlighting the importance of authentic patient participation in advancing medical science.
In today's digital age, social media has the power to unite and amplify voices, and Stacey's journey demonstrates just that. Through platforms like Instagram and TikTok, she has found a vibrant community that offers solidarity and resources. Stacey also shares insights from Social Sid's advocacy within the HS community, illustrating how relatable content can spark impactful connections. We wrap up with an engaging discussion on the emotional trials parents face when seeking diagnoses for their children, emphasizing the need for determination and trust in one's instincts. Stacey's dedication to amplifying patient voices and building a supportive community is a testament to the transformative power of shared experiences and collective action.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Welcome back to my Spoonie Sisters podcast.
It is your co-host, allie, here.
Yes, I am doing theintroduction today and I am very
excited, and I do apologize inadvance if I mess this up, but
today we have a truly inspiringguest joining us Stacey Haynes.
Stacey is a proud wife, motherand fierce advocate in the
(00:22):
chronic illness community, and Imean fierce.
Her journey began when herdaughter was diagnosed with
Crohn's disease at just twoyears old, followed by
ulcerative colitis and arthritis.
Stacey's advocacy has also beenshaped by her own health
challenges, being diagnosed withthyroid cancer in 2016, which
she thankfully overcame.
(00:42):
Yes, for the past three years,stacey has been an integral part
of Rare Patient Voice, rpv,connecting patients and
caregivers to paid medicalresearch opportunities.
Through her work and herpresence on social media
platforms like TikTok andInstagram, stacey is amplifying
patient voices and fosteringmeaningful change babies.
(01:03):
We're excited to hear moreabout her story and the
incredible work that she isdoing.
Hello, stacey, and welcome.
Speaker 2 (01:11):
Hi, thank you, Thank you.
Thank you so much for having metoday.
I'm so excited to be here andshare the space with you today.
Speaker 1 (01:16):
I am so excited.
We also have our co-host, AndyLinnea, and Jenny, our main host
here.
Hello to all of you.
We're all very excited tointerview Stacey today.
Stacey, can you give us alittle introduction?
I know I kind of give a briefone, but can you introduce
yourself, Let us know and ourlisteners who you are and a
little bit about yourself.
Speaker 2 (01:35):
Sure, that would be awesome.
So I'm Stacey Haynes.
I run the social mediadepartment here at Rare Patient
Voice.
I am also part of the outreachteam.
We have an amazing communitypresence on Instagram and TikTok
Facebook.
We're on all the social mediaplatforms.
As you stated, allie, I am awife, I am a mother, I love the
outdoors.
(01:55):
I live in the beautiful islandof Kauai in the state of Hawaii.
I'm very thankful to be in thechronic illness community and to
be an advocate in such anever-growing community.
And again, thanks for having me.
Speaker 3 (02:09):
I just have to say, allie, you did a marvelous
introduction.
Why thank?
Speaker 1 (02:14):
you.
Speaker 3 (02:14):
Stacey, I am just thrilled to have you here
because I feel like I know youso well.
Thank you, thank you, thank you, thank you.
Do you mind sharing a littlebit about your family's
journeyyear-old son who is?
He's like the epitome of health.
Speaker 2 (02:28):
He never gets sick, he's just perfect.
(02:51):
And then we give birth to thislittle baby and she's just so
fragile.
And day four literally startedmy journey into finding a
diagnosis for her.
And it took years and years andmultiple doctors living on this
little teeny rock in the middleof the Pacific.
We had to do a lot of travelingto get the care that she needed
.
The Children's Hospital is onOahu, so it's a 20-minute flight
(03:14):
from here, so our pediatricianwould bounce us back and forth
to different specialists andIris's health continued to
decline and decline, and declineand so we almost lost her.
And that's when my husband andI decided to jump on a plane and
I'm originally from the EastCoast, the Philadelphia area so
we jumped on a plane and myhusband and I went to the
(03:36):
Children's Hospital ofPhiladelphia and, just shy of
Iris's third birthday, she wasdiagnosed with Crohn's disease.
So once we had the diagnosis, Ifelt that we had a better plan.
We could.
Finally we had a name to whatwas going on and we could
finally start to help her in herhealing journey, which ended up
taking a lot longer than I hadexpected.
(03:58):
I figured we had a diagnosis.
I had never met anybody withCrohn's disease before, let
alone a toddler with Crohn's.
I thought that we were going toget a diagnosis.
I had never met anybody withCrohn's disease before, let
alone a toddler with Crohn's.
I thought that we were going toget a diagnosis, get medication
and send us on our way.
Well, finding her diagnosissnowballed into more doctors,
more medications, more ofeverything, and it gets a little
(04:21):
overwhelming.
And that's when I turned tosocial media.
I was all by myself, my husbandand I.
We didn't know anybody withthis condition.
What do us millennials do, genZ?
We turned to social media, so Istarted an Instagram page and
overnight I had the chronicillness community open their
arms and take us in andliterally hold my hand.
(04:41):
They would walk me throughevery doctor's appointment.
Everybody would give medifferent questions that I
should be asking the doctors.
The support that I had from thisonline presence literally
became my family overnight, andif it hadn't been for the
chronic illness community, I'mnot sure that Iris would have
her progress in her healingjourney would have happened so
(05:01):
quickly.
So she's 11 now and she stillhas good days.
She still has really bad days.
One thing that I've learnedabout chronic illness is the
word chronic is all the timeright.
So it's something that we haveto manage her health on a daily
basis, whether that be not goingto school because she needs
extra sleep.
With Iris, everything has tocome a little extra harder.
(05:23):
She's a dancer but she's got towork a little bit harder than
all the other dancers becauseher body is sore or she has to
listen to her knee because herknee can't quite move that way.
Today I do have to say, throughthis whole journey, community to
me has been number one.
It has been the greatest thingto ever come out of chronic
illness.
Not only our online presencebut our community as a whole
(05:46):
here on Kauai.
My husband and I had to leave.
I ended up my daughter and Iended up living at the Ronald
McDonald House at Stanford forthree months and that's hard as
a family because at home I hadan eight-year-old son at the
time and my husband, so it'shard to separate that, like in a
family dynamic.
Our community really stepped upand they had fundraisers for us
(06:07):
.
They did all kinds of things.
I really, really, really owe itto community in general for me
being able to sit here todayhaving this conversation with
you guys, for my daughter to beable to attend public school,
for her to be able to dance, formy son to feel so confident in
who he is.
The journey has been crazy andit's not over, and it's just
(06:28):
neat to watch the community grow.
Speaker 3 (06:30):
It's been neat to see you share a little bit about
your story and your daughter.
I love when that's incorporatedinto what we see on Instagram
and TikTok.
I think it's a beautiful thing.
So thank you so much for whenyou share that.
Speaker 2 (06:43):
Thank you.
Yeah, I love our Instagram pagewith Rare Patient Voice, but we
can get to that, we'll getthere.
Speaker 4 (06:50):
Stacey, how's it going?
So how do you?
You have your hands in a lot ofthings.
How do you stay motivated?
How do you stay motivated whilenavigating your own stuff and
navigating stuff with yourdaughter and balancing work and
life?
How?
Speaker 2 (07:09):
do you navigate your own things while caring for so
many other people?
This is a tough question andit's really easy for people to
say I do self-care or I do yogatwice a week or I do breathing
techniques in my room.
Really, I'm just a regular momtrying to keep my head above
water while raising a family,being a wife, holding a
full-time job and beingcommitted to my kids and their
extracurriculars.
And, honestly, my work group Iwork at Rare Patient Voice 40
(07:33):
hours a week and there's about ateam of 40 of us and all of us
are either patients ourselves orfamily caregivers.
So, working with such a tightknit group, they allow a lot of
flexibility.
So if I need a day, or if I need10 minutes, or if I need time
for like, just a mental healthday, for me it is without
(07:53):
question.
They're like yes, please takethat day for you, and for me
that might literally be layingin bed and scrolling on TikTok
for two hours, or that couldmean taking a walk on the beach.
But I like to be realistic,andy, when it comes to that
question, because it's so easyfor us to say I sit down and
read books for two hours or,literally, for me.
I clean my house real quick sothat the space around me is
(08:15):
quiet, so that I can have aquiet moment.
Right, I find those self-caremoments in when Iris is in the
bathroom taking a bath and myhusband is putting away his work
stuff for the day and my son'staking a nap in his room and I
have that 10 minutes to justreflect and really like thankful
.
Especially now thateverything's kind of like
baseline, it's a lot easier forme to breathe.
(08:37):
When I was in the thick of itthere really wasn't time for
self-care and I know a lot oftimes people are like you need
to take care of yourself or youcan't take care of them.
I would be lying if I said thatthere were nights where I
wasn't up at three o'clock inthe morning Googling and
web-emding everything andanything that I could.
I would be lying if I told youthe first four years of Iris's
(08:57):
life I did any sort of self-care, because I didn't.
It was survival mode.
And then, once we got to thatbaseline, we could all take a
deep breath.
Speaker 4 (09:07):
Right.
Speaker 2 (09:07):
I think keeping an open communication with my
family is what kept our familytogether, Because a lot of times
, when you're really in thethick of it, when it comes to
flight or fight, you might loseyour family over certain
decisions that need to be madeor lack of being present.
Have you ever seen that movieWonder?
It's Owen Wilson and the littleboy with the facial deformities
(09:30):
.
There was one night that we hadcome back from Stanford and we
had been gone for three monthsand there was this part in the
movie where there's an oldergirl in the movie and she takes
on so much responsibility andshe never wants to be a burden
on her parents because ofeverything that's going on with
her younger brother.
And my whole entire worldshifted that night sitting on
(09:53):
the couch, because for threemonths I would call my son and
FaceTime my son because he's mynumber one.
Right, he's always been supersolid.
I was always just like he'sokay, he's okay.
And when I saw that part of themovie, everything shifted for me
.
That day, you know, there wasextra time for my 12 year old
son, tickling his back at nightbefore bed, asking him for real
(10:17):
like how was your day today, bud?
Not like all right, he's good,he showered, he's in bed.
So it's a journey in itselftrying to navigate chronic
illness and nobody has theanswers and there is no workbook
on the right way or the wrongway and you're not going to know
whether it's the right way orthe wrong way unless you live it
and you just live day to day.
Speaker 4 (10:35):
So in the intro we briefly discussed a little bit
about your journey with thyroidcancer.
Do you mind talking about it?
Speaker 2 (10:44):
It was a really quick chapter in my life.
I was working full-time at ourlocal organic grocery store out
here.
I was the grocery buyer thereand I was a full-time mom.
I was working full-time and Iwas just fatigued all the time,
just tired.
I wrote it off as I'm a momdealing with a baby with chronic
illness.
I'm a mom of a son who's eightyears old, who's playing Pop
Warner football.
(11:04):
I'm a wife.
I'm a mom dealing with a babywith chronic illness.
I'm a mom of a son who's eightyears old, who's playing Pop
Warner football.
I'm a wife.
I'm trying to keep the housetogether and work 40 hours,
right.
So I kept writing it off, keptwriting it off and honestly, I
was sitting there one day at thecomputer doing research on like
holistic medicines and thingslike that.
I felt a lump on my throat.
I immediately went into a fullsweat, panic, like my gosh.
I called my doctor, they did abiopsy on it and immediately he
(11:32):
was like this is stage onecancer.
Not even a week later weremoved half of my thyroid and
that was a nightmare.
Talk about horrible surgeriesanything in your throat, because
you have no idea how much youuse your neck muscles.
So that was a really quickturnaround, andy.
It was one week biopsy, nextweek diagnosis, following week
take the thyroid out and then itwas maybe like a four or five
week recovery.
(11:53):
But my husband allowed thattime for me to rest.
Iris Ann has always been veryintuitive.
My daughter was chronic illnessso even at two years old when I
had the surgery she was verydelicate and Iris has always
been very delicate and verysweet and very kind and very not
like most toddlers that arelike the bull in the china shop
(12:14):
kind of kids.
You know.
She's always just been verydelicate and for her at that age
to see me in the situation thatshe's usually in it was it was
neat to see that just becauseshe was so compassionate.
And but realistically, thatchapter in it was neat to see
that just because she was socompassionate, but realistically
, that chapter in my life wasvery quick.
I still get scans and thingslike that and my thyroid needs
(12:35):
to be checked.
Now that I'm enteringperimenopause which is nightmare
I have to check on my thyroidmore often because we rely on
our thyroid a lot as women.
I always have to make sure thatI keep that in check as well.
Speaker 4 (12:44):
Thanks.
Thank you for sharing.
Speaker 3 (12:48):
Thank you for asking.
I have a follow-up question foryou.
With having part of thatremoved, were there medications
that you had to go on, and whatdoes all that entail?
Speaker 2 (12:58):
Yep, I don't know if hormone medications are crazy,
because it's not aone-size-fits-all.
I was introduced to so manythings to me, so my whole entire
upbringing has been holistic,it's been alternative, it's been
only organic, no GMOs.
And when Iris was born, I triedall of that with her and none
(13:19):
of it was working and I finallyhad to say yes to pharmaceutical
medications.
I finally had to say yes to theWestern ways.
So, jen, when it came to mythyroid, the doctor was putting
me on tons of differentmedications to try to supplement
the lack of, because I only hadhalf, and it was awful.
It was absolutely awful.
I was literally losing my mind.
(13:40):
I was angry all the time or I'dhave hot flashes.
I think I was maybe 32, 32 whenI had it, and so I ended up
saying no more, I can't do thisanymore.
I did it for like six monthstrying to regulate all of these
different medications and sincethen it's been OK.
I have half a thyroid and sinceI've been 32, I've had enough
thyroid to carry me through.
(14:02):
But I'm thinking that'schanging.
Actually, as we speak, I've got15 doctor's appointments with
different doctors coming ahead.
I've been having like thesecrazy cluster headache, so they
don't know if it's hormonerelated because of the
perimenopause, or so.
I've got eye doctor, neurology.
I've got like a whole plethoraof appointments coming up.
So no medications for mythyroid right now, but I'm sure
(14:26):
that that will be something thatI have to come to terms with in
the very near future.
Thank you for sharing that.
Speaker 3 (14:33):
For those who might not know, can you explain what
Rare Patient Voice does and howit helps patients and caregivers
?
Speaker 2 (14:42):
So Rare Patient Voice connects patients and
caregivers to medical researchstudies, right?
So pharmaceutical companiescome to Rare Patient Voice
asking us for help in recruitingfor clinical trials online
surveys, zoom interviews,in-person interviews, focus
groups, bulletin boards tons ofdifferent opportunities to get
(15:03):
involved and we connect patientsand caregivers to these studies
and, in turn, the patients andcaregivers are paid for their
time.
So we pay at a rate of $120 anhour.
So say, for instance, we have aZoom meeting that is going to
be 60 minutes long.
Participants, we will send outinvites to these potential
(15:24):
participants and if they passthe screeners, then they are
invited to the study and oncethe study closes, each
individual is paid out anywherefrom $120,000 or more, depending
on what the pharmaceuticalcompanies are offering us.
So we have a panel of over100,000 patients and family
caregivers.
We take a lot of pride in that,because we work really hard on
(15:45):
the back end to make sure thatthese 100,000 patients and
caregivers are actual diagnosedpatients and actual family
caregivers that take their timeto care for their loved ones.
The last thing we want to do isallow fraudulent individuals
into a study that they have noidea about.
There's no reason that anybodyshould be doing a Crohn's
(16:06):
disease study if they've neverlived with the disease or have
ever cared for somebody withthat disease.
So we have an amazing panelmanagement team who goes through
each individual profile one byone, every single day, every
single sign up and we look forcertain red flags with these
sign ups and if they pass thecriteria, they are verified and
they are part of our panel andthen for them moving forward, if
(16:29):
we have any studies that matchtheir conditions, they are
emailed an invite that they havethe choice to open or not.
You're not committed toanything when you sign up, but
you do have opportunities toamplify your own voice in a
different way to advocate.
Before I knew anything aboutmedical research and things like
that, I only thought it wasclinical trials.
(16:49):
I thought that only clinicaltrials existed and that was the
only way that you couldparticipate in medical research.
I was definitely wrong.
There are, I mean, a simplesurvey.
Maybe a pharmaceutical companyneeds to know for a Crohn's
disease panel.
Would you be interested in XYZ,right?
So then they push that panelout to all the Crohn's disease
patients or caregivers and weanswer that maybe that survey
(17:12):
will be the reason that the nextbig breakthrough happens,
because there was a panel of 700people that said you know what?
Yes, I would definitely love tomove forward with you in this
new, this X, y or Z.
There's so many differentopportunities to get involved in
medical research.
That's one thing that I'vetaken from Air Patient Voice,
from an individual standpoint,thinking that clinical trials
(17:34):
were the only way to getinvolved in medical research.
So that's really what we do, iswe just connect the community?
Speaker 3 (17:43):
with the research.
Well, and I don't know if allof you are signed up.
If you are not, go do it.
I've done some.
I've done some on depression,on psoriasis, on rheumatoid
arthritis Super easy.
Some of them are just aquestionnaire.
Sometimes it's the Zoom.
They're all easy.
It's incredibly easy to do, andif you don't qualify, you don't
qualify.
Sometimes it's because maybethey're looking for a black man
(18:05):
and I'm a white woman.
That's okay, I don't fit thecriteria, I move on, but I think
it's great.
I love the emails that you sendout.
Sometimes I get reminders on myInstagram from you.
I love that too.
For those listening.
If you haven't signed up, wehave a link in the show notes,
so go do it.
It's super easy.
Just take the five minutes.
(18:31):
All right, this is cool.
Can you share a success storyor impactful moment that you've
experienced while working withRare Patient Voice?
Speaker 2 (18:34):
So you sent me this question and it really I had to
really think about it because Ifeel like every day working with
Rare Patient Voice pulls on myheartstrings all the time.
I feel really proud of what wedo at Rare Patient Voice.
There's so many right.
We have many differentcommunities within our community
.
At Rare Patient Voice, there'sso many right.
We have many differentcommunities within our community
.
At Rare Patient Voice on ourInstagram, One of my favorite
(18:57):
success stories is her handle.
Her name is Social Sid.
She is an advocate for the HScommunity and she did an
in-person interview for us thatwe connected her with and she
had to fly to Atlanta, Georgiaor something.
There was a handful ofindividuals in the HS community
that follow us on Rare PatientVoice that got the green light
(19:20):
and they went and did thisin-person interview and there
was a whole room filled of themand not only have they all
become best friends, but itreally was a catalyst for their
I don't want to say theirsuccess on social media and
their their advocacy on socialmedia, but it really upped their
game.
(19:40):
It was a total game changer forthem and they were able to come
back from that.
They've been to so manydifferent hs community events.
Now they've created their ownevents and Social Sid always
brings it back to us, Likewhenever she's on podcasts or
being interviewed.
She always says Rare PatientVoice helped me get to where I
am today, simply because shesigned up and was able to use
(20:04):
her voice and then took that andran with it.
Right, Just building theconfidence in individuals.
Our community on Instagramgrows every day.
I personally try to make ourInstagram relatable.
I don't want it to be filledwith just we're research.
You know we're helping researchcompanies fill studies.
You know you get a number.
You get a number.
You get a number.
I want to know, Jen, what's yourstory?
(20:25):
You know, and I reached out toJen probably two years ago,
Right, and now we talk aboutwildfires and you know, I see
something going on and I quicktext, Jen, like, oh my gosh, did
you hear about this?
Or you know, I want to knowwhat Andy's story is and Allie's
story is, and I want to knowthat your daughter is going
through similar things that I am.
I'm not just some AI bot behindInstagram, right?
(20:47):
We're a real community, we'rereal people, we community, we're
real people, we have realstories and we're real
individuals, right.
So I like to feel our Instagramis like a success story too,
because it's kind of my baby.
Rare Patient Voice came to me.
They found me through my socialmedia because one of the women
that works here at Rare PatientVoice she also had a son who had
the same diagnosis as Iris, soshe had been following Iris
(21:08):
literally since you know we werelooking for a diagnosis.
She reached out to me I guessit was right after COVID, I
think because I wasn't working.
She had asked if I could startan Instagram for them or this
and that I wasn't looking forwork.
And then it just turned intoyes, and can I have TikTok and
can I do this and can I do that,and it's just been so much fun,
(21:29):
I agree.
Speaker 3 (21:30):
I think it is a success story and you are
talented at it.
They have the right persondoing the job.
You are engaging, you're fun,you talk to people, you reply
back to people and that's whatmakes you you.
That's what makes us special.
Speaker 1 (21:46):
Yeah, thank you.
Speaker 3 (21:47):
How has social media, especially platforms like
TikTok and Instagram?
How have they helped youconnect with the chronic illness
?
Speaker 2 (21:53):
community.
Well geez, in this day and ageit's so easy.
I mean literally, you just typein a condition and you find
your community right.
I've always had a really chattymouth, right, I've always been
hey, I'm here that kind ofperson.
So for me, social is a lot offun to connect with individuals,
(22:14):
to network, to find newresources.
When I find new things, I wantto tell everybody.
I want our community, our PV,to know that I found a new
gluten-free product that mydaughter might be able to have.
That's not only gluten-free,but it's peanut-free and
egg-free and dairy-free andfree-free-free.
Like social media obviously hasits ups and downs, but I feel
like, if you use it correctly,it's the greatest thing to
(22:36):
happen to the human race,because you have instant
gratification, you have instantanswers, you have instant
connections.
I often have people reach outto me on Instagram asking how do
I start?
How can I start my advocacy?
Where do I start?
And I've been there.
I literally say share yourstory, start with your story
right.
Start with your story.
(22:57):
You have a story to tell, youknow your story Right, so start
there and then you will findcommunity and the community will
come to you Right?
I love social media.
Not everybody loves socialmedia.
You know my husband isn't verygood at it, but I love it Right.
So social media for me is thegreatest, and to be able to be a
part of it every single dayit's such a blessing.
Speaker 3 (23:18):
I couldn't agree more .
Anyone else want to chime in?
Then TikTok.
Speaker 1 (23:21):
I love it.
Yes, tiktok, I just I love howyou said this in the beginning
of the podcast.
Like you were going throughthis alone with your daughter
getting diagnosed, and then youreached out on social media and
got a plethora of DMs and peoplehelping you.
I always tell people who justgot diagnosed with anything or
who is in the process of gettingdiagnosed to find your people
on social media.
(23:41):
Like you said, just hashtag.
Like when I was startingEnverol, I hashtag Enverol and
now I'm best friends withsomebody I found injecting and
that was like five years ago.
So, yes, please contact orhashtag whatever you have,
whatever you're on, and connectwith people who understand what
you're going through.
And then, stacey, do you haveany advice for parents who are
(24:02):
going through what you wentthrough with their children
trying to get a diagnosis, anyadvice that you would give them?
Speaker 2 (24:07):
I don't know if I'm the person to ask that, because
I got angry and once I startedto get angry, I started to get
to where I needed to go.
I think being complacent orcompliant with something that
doesn't sit right in your gut.
You need to listen to that.
If you're up at 2 am and thedoctor sent you home at 4
(24:30):
o'clock in the afternoon and youstill don't think something's
right, get back there or go to adifferent hospital and ask as
many questions as you can.
If you don't know the questions, turn to your online community
and ask for help.
There's always somebody willingto help and this is going to
sound weird too, but chat GPT.
If you ask chat GPT, what arethe top 10 questions that I
(24:52):
should go in and ask my doctortoday about this?
That and the other ChatGPT willbreak it down for you and say
here are the top 10 questionsyou should ask your doctor today
, right?
So if you don't feelcomfortable asking for help
within a certain community,chatgpt can totally help you.
I'm not always team AI, butthere is a time and a place for
it.
I think if you're not confidentenough yet in taking that step
(25:17):
for asking for help withdifferent communities you can
turn to that.
That's a great asset to use.
I think listen to your gut isreally what I'm going to say.
If you feel you're sitting inthere and there's a doctor not
talking to you the way that youwant them to talk to you, or a
nurse comes in and you don'tfeel confident that they're
going to be okay handling yoursituation for the next 12 hours,
you can ask for a new nurse.
(25:38):
That's okay.
You have rights within themedical industry and I think
that if we had more peopleadvocating for individuals that
it's okay to say no or it's okayto say yes, then I think we
would all feel more confidentwalking into a doctor's office,
right?
So I just feel, doing yourresearch.
Doctors will say don't doresearch, I do your research, do
(26:02):
your due diligence, learn asmuch as you can about your
condition and go from there.
Speaker 4 (26:09):
Stacey, your personality is contagious.
It is making my heart so warm.
Okay, it's making my heart sowarm.
Okay, it's making my heart sowarm.
What is Stacey's goal for thefuture?
Personally, professionally,with your family?
Where do you see you growing inthe future?
That's a great question.
Speaker 2 (26:26):
I've been with Ray Patient for three years.
This year we'll make four.
I think I love collaborations.
I want to do morecollaborations.
This is me getting outside thebox.
This is my first podcast withJen.
This is like probably thegreatest start to podcasts.
I want to do a lot morecollaborations.
I want to allow the communityto give me ideas on how we can
(26:47):
expand, how we can betteraccommodate them.
I am a voice for the community,so use me I'm in no rush with
Rare Patient Voice to run asfast as I can.
I'm very comfortable with whereI'm at right now.
I think fostering and tidyingup all the little corners of our
social media and our communityI think is one of my biggest
(27:09):
goals for 2025 with Rare PatientVoice.
My personal goal is to get evenmore healthy with my marriage.
My husband and I have beenmarried for almost 20 years.
I feel like the past six monthshave been like really frayed.
We're doing tons of differentthings together that we wouldn't
normally do.
I think for 2025, personally,will be my marriage and my
(27:33):
self-care.
I have a lot going on with menow medically.
I want to make sure that I nipthat in the bud now so that here
comes summer, and summer is myfavorite season of all.
I'm ready for it.
I think for me, this year isjust I don't have big goals for
2025.
I'm very happy with where I'mat right now.
I feel good mentally, I'mfeeling really good physically.
(27:54):
I kind of just want to tastethat for a little while and I've
got not huge goals for 2025,but the goals that I've set I
think are going to be achievableand I look forward to more
collaborations and just tons ofdifferent networking and just
making my voice even louder foreveryone.
Speaker 3 (28:12):
I would like to see you at events, so like when I
went to ACR Convergence, I thinkit'd be awesome to see you guys
there with the table set up.
Speaker 2 (28:19):
Yeah we do do events, jen, jen and if you ever go on
and you see, brooklyn runs ourFacebook, brooklyn and Jen are a
mother-daughter duo, but we arethe three of us are a team and
they travel coast to coast doingdifferent shows.
I think, jen, I think she didclose to 22 patient events last
(28:42):
year.
Jen, if you see one, we're like, wow, rare patient voice should
probably be here.
Send it to me, because we arealways looking to travel.
I don't really get to be thatperson because I live in the
middle of nowhere and it's kindof expensive for them to get me
places, but the louder we areabout getting me to places is a
good thing.
If you see any, send them ourway, because Jen and Brooklyn
are always looking.
We're already building our listof where we're going in 2025.
(29:04):
We have a bigger budget thisyear, so we are looking to
spread our wings and get allover the United States.
We're looking for differentsocial media conferences maybe
we can attend this year.
Definitely patient events,caregivers events.
We also do client events.
But that's Jen and Brooklyn,and I kind of stay more towards
(29:25):
the patient and caregiver sideof things.
I mean, rare Patient Voice isall over the place.
I guess maybe I should be alittle bit more loud on sharing
that on social media.
Speaker 4 (29:31):
That is so funny that you would bring that as a segue
, because my next question wascan you tell the people how they
can stay connected with you sothat they could be all wrapped
in this contagious personality,because they need a dose of it
for real.
Thank, you.
Speaker 2 (29:47):
We are all over social media.
We're obviously on the biggestplatforms.
We're on Facebook, instagram,tiktok.
I just started Blue Sky.
We're on Fred's what else?
Pinterest, teams we're not onRed, we're on Teams.
Sorry, but yeah, you can followus on all of those.
Know that if you are onInstagram and you DM, it's me
(30:09):
that you're going to talk to100% of the time.
There's nobody else that runsthat account.
You will always talk to me.
I am kind of in the middle ofnowhere, so I'm a five hour
difference right now from theEast Coast.
So if you're laying in bed atnight and I don't get back to
you, it's simply because ourtime difference.
But I have my phone on me allthe time and I hear you dinging
(30:30):
and I usually don't ever letmore than six or seven hours go
before replying.
Facebook is Brooklyn, so ifyou're ever on Facebook and
you're looking to talk tosomebody, you'll be speaking to
Brooklyn.
Tiktok is always me.
Threads is me.
I have a hard time with Threadsand Blue Sky.
I don't.
Are there any tips or tricksand anything for those those
guys?
No, what is Blue Sky?
(30:52):
Blue Sky is kind of like.
Speaker 1 (30:54):
I have Blue Sky.
Speaker 2 (30:57):
It?
What is blue sky?
Blue sky is kind of like I haveblue sky.
It's kind of like x or twitter.
It's kind of like a.
It's kind of like threads.
I saw like I saw it a week agowhen everybody was getting ready
to do the tiktok ban.
Everybody's like, follow mehere, follow me there.
Speaker 1 (31:05):
So I started all these social medias or on blue
sky, but it's not in there forme it's like a breath of fresh
air because I follow like naturestuff on there, science,
science stuff.
So when I just want to get awayfrom the craziness of social
media, I go there and I look atpics of like animals and space
and I'm like I love blue sky.
Speaker 2 (31:23):
But yeah, start to love it, then I'm going to
change my attitude around it.
Speaker 3 (31:27):
Okay, I think we all need to give it a better chance.
Okay, well, thank you so much,stacey, for sharing your journey
and all the incredible workthat you do at Rare Patient
Voice, dedication to amplifyingthe patient voices and building
community All of it is trulyinspiring.
We're grateful for all that youdo and for having you on the
(31:47):
podcast today.
Speaker 2 (31:48):
Well, thank you so much for having me.
I really do appreciate it.
I was very nervous when we gotin here, but now I feel like,
wait, are you guys going to callme next week so we can all hang
out?
Speaker 3 (31:55):
nervous when he got in here but now I feel like wait
, are you guys gonna call menext week so we can all hang out
?
Yeah, I know we're gonna haveto come up with like another
option.
Speaker 2 (32:01):
I love this a lot more often oh yeah, or maybe
we'll just go live on instagrama lot more or something.
I like that idea too.
Speaker 3 (32:09):
Yeah, we never do that on my spinny sisters, so
maybe we can do that yeah thatcould be fun oh, it's growing.
Thank you everyone for beinghere.
I appreciate every single oneof you, ladies.
You all are amazing and I loveyou to pieces.
Speaker 2 (32:24):
Yes, thank you, girls .
So much for having me today.
Speaker 3 (32:27):
Until next time don't forget your spoon.
Welcome back to my Spoonie Sisters podcast.
It is your co-host, allie, here.
Yes, I am doing theintroduction today and I am very
excited, and I do apologize inadvance if I mess this up, but
today we have a truly inspiringguest joining us Stacey Haynes.
Stacey is a proud wife, motherand fierce advocate in the
(00:22):
chronic illness community, and Imean fierce.
Her journey began when herdaughter was diagnosed with
Crohn's disease at just twoyears old, followed by
ulcerative colitis and arthritis.
Stacey's advocacy has also beenshaped by her own health
challenges, being diagnosed withthyroid cancer in 2016, which
she thankfully overcame.
(00:42):
Yes, for the past three years,stacey has been an integral part
of Rare Patient Voice, rpv,connecting patients and
caregivers to paid medicalresearch opportunities.
Through her work and herpresence on social media
platforms like TikTok andInstagram, stacey is amplifying
patient voices and fosteringmeaningful change babies.
(01:03):
We're excited to hear moreabout her story and the
incredible work that she isdoing.
Hello, stacey, and welcome.
Speaker 2 (01:11):
Hi, thank you, Thank you.
Thank you so much for having metoday.
I'm so excited to be here andshare the space with you today.
Speaker 1 (01:16):
I am so excited.
We also have our co-host, AndyLinnea, and Jenny, our main host
here.
Hello to all of you.
We're all very excited tointerview Stacey today.
Stacey, can you give us alittle introduction?
I know I kind of give a briefone, but can you introduce
yourself, Let us know and ourlisteners who you are and a
little bit about yourself.
Speaker 2 (01:35):
Sure, that would be awesome.
So I'm Stacey Haynes.
I run the social mediadepartment here at Rare Patient
Voice.
I am also part of the outreachteam.
We have an amazing communitypresence on Instagram and TikTok
Facebook.
We're on all the social mediaplatforms.
As you stated, allie, I am awife, I am a mother, I love the
outdoors.
(01:55):
I live in the beautiful islandof Kauai in the state of Hawaii.
I'm very thankful to be in thechronic illness community and to
be an advocate in such anever-growing community.
And again, thanks for having me.
Speaker 3 (02:09):
I just have to say, allie, you did a marvelous
introduction.
Why thank?
Speaker 1 (02:14):
you.
Speaker 3 (02:14):
Stacey, I am just thrilled to have you here
because I feel like I know youso well.
Thank you, thank you, thank you, thank you.
Do you mind sharing a littlebit about your family's
journeyyear-old son who is?
He's like the epitome of health.
Speaker 2 (02:28):
He never gets sick, he's just perfect.
(02:51):
And then we give birth to thislittle baby and she's just so
fragile.
And day four literally startedmy journey into finding a
diagnosis for her.
And it took years and years andmultiple doctors living on this
little teeny rock in the middleof the Pacific.
We had to do a lot of travelingto get the care that she needed
.
The Children's Hospital is onOahu, so it's a 20-minute flight
(03:14):
from here, so our pediatricianwould bounce us back and forth
to different specialists andIris's health continued to
decline and decline, and declineand so we almost lost her.
And that's when my husband andI decided to jump on a plane and
I'm originally from the EastCoast, the Philadelphia area so
we jumped on a plane and myhusband and I went to the
(03:36):
Children's Hospital ofPhiladelphia and, just shy of
Iris's third birthday, she wasdiagnosed with Crohn's disease.
So once we had the diagnosis, Ifelt that we had a better plan.
We could.
Finally we had a name to whatwas going on and we could
finally start to help her in herhealing journey, which ended up
taking a lot longer than I hadexpected.
(03:58):
I figured we had a diagnosis.
I had never met anybody withCrohn's disease before, let
alone a toddler with Crohn's.
I thought that we were going toget a diagnosis.
I had never met anybody withCrohn's disease before, let
alone a toddler with Crohn's.
I thought that we were going toget a diagnosis, get medication
and send us on our way.
Well, finding her diagnosissnowballed into more doctors,
more medications, more ofeverything, and it gets a little
(04:21):
overwhelming.
And that's when I turned tosocial media.
I was all by myself, my husbandand I.
We didn't know anybody withthis condition.
What do us millennials do, genZ?
We turned to social media, so Istarted an Instagram page and
overnight I had the chronicillness community open their
arms and take us in andliterally hold my hand.
(04:41):
They would walk me throughevery doctor's appointment.
Everybody would give medifferent questions that I
should be asking the doctors.
The support that I had from thisonline presence literally
became my family overnight, andif it hadn't been for the
chronic illness community, I'mnot sure that Iris would have
her progress in her healingjourney would have happened so
(05:01):
quickly.
So she's 11 now and she stillhas good days.
She still has really bad days.
One thing that I've learnedabout chronic illness is the
word chronic is all the timeright.
So it's something that we haveto manage her health on a daily
basis, whether that be not goingto school because she needs
extra sleep.
With Iris, everything has tocome a little extra harder.
(05:23):
She's a dancer but she's got towork a little bit harder than
all the other dancers becauseher body is sore or she has to
listen to her knee because herknee can't quite move that way.
Today I do have to say, throughthis whole journey, community to
me has been number one.
It has been the greatest thingto ever come out of chronic
illness.
Not only our online presencebut our community as a whole
(05:46):
here on Kauai.
My husband and I had to leave.
I ended up my daughter and Iended up living at the Ronald
McDonald House at Stanford forthree months and that's hard as
a family because at home I hadan eight-year-old son at the
time and my husband, so it'shard to separate that, like in a
family dynamic.
Our community really stepped upand they had fundraisers for us
(06:07):
.
They did all kinds of things.
I really, really, really owe itto community in general for me
being able to sit here todayhaving this conversation with
you guys, for my daughter to beable to attend public school,
for her to be able to dance, formy son to feel so confident in
who he is.
The journey has been crazy andit's not over, and it's just
(06:28):
neat to watch the community grow.
Speaker 3 (06:30):
It's been neat to see you share a little bit about
your story and your daughter.
I love when that's incorporatedinto what we see on Instagram
and TikTok.
I think it's a beautiful thing.
So thank you so much for whenyou share that.
Speaker 2 (06:43):
Thank you.
Yeah, I love our Instagram pagewith Rare Patient Voice, but we
can get to that, we'll getthere.
Speaker 4 (06:50):
Stacey, how's it going?
So how do you?
You have your hands in a lot ofthings.
How do you stay motivated?
How do you stay motivated whilenavigating your own stuff and
navigating stuff with yourdaughter and balancing work and
life?
How?
Speaker 2 (07:09):
do you navigate your own things while caring for so
many other people?
This is a tough question andit's really easy for people to
say I do self-care or I do yogatwice a week or I do breathing
techniques in my room.
Really, I'm just a regular momtrying to keep my head above
water while raising a family,being a wife, holding a
full-time job and beingcommitted to my kids and their
extracurriculars.
And, honestly, my work group Iwork at Rare Patient Voice 40
(07:33):
hours a week and there's about ateam of 40 of us and all of us
are either patients ourselves orfamily caregivers.
So, working with such a tightknit group, they allow a lot of
flexibility.
So if I need a day, or if I need10 minutes, or if I need time
for like, just a mental healthday, for me it is without
(07:53):
question.
They're like yes, please takethat day for you, and for me
that might literally be layingin bed and scrolling on TikTok
for two hours, or that couldmean taking a walk on the beach.
But I like to be realistic,andy, when it comes to that
question, because it's so easyfor us to say I sit down and
read books for two hours or,literally, for me.
I clean my house real quick sothat the space around me is
(08:15):
quiet, so that I can have aquiet moment.
Right, I find those self-caremoments in when Iris is in the
bathroom taking a bath and myhusband is putting away his work
stuff for the day and my son'staking a nap in his room and I
have that 10 minutes to justreflect and really like thankful
.
Especially now thateverything's kind of like
baseline, it's a lot easier forme to breathe.
(08:37):
When I was in the thick of itthere really wasn't time for
self-care and I know a lot oftimes people are like you need
to take care of yourself or youcan't take care of them.
I would be lying if I said thatthere were nights where I
wasn't up at three o'clock inthe morning Googling and
web-emding everything andanything that I could.
I would be lying if I told youthe first four years of Iris's
(08:57):
life I did any sort of self-care, because I didn't.
It was survival mode.
And then, once we got to thatbaseline, we could all take a
deep breath.
Speaker 4 (09:07):
Right.
Speaker 2 (09:07):
I think keeping an open communication with my
family is what kept our familytogether, Because a lot of times
, when you're really in thethick of it, when it comes to
flight or fight, you might loseyour family over certain
decisions that need to be madeor lack of being present.
Have you ever seen that movieWonder?
It's Owen Wilson and the littleboy with the facial deformities
(09:30):
.
There was one night that we hadcome back from Stanford and we
had been gone for three monthsand there was this part in the
movie where there's an oldergirl in the movie and she takes
on so much responsibility andshe never wants to be a burden
on her parents because ofeverything that's going on with
her younger brother.
And my whole entire worldshifted that night sitting on
(09:53):
the couch, because for threemonths I would call my son and
FaceTime my son because he's mynumber one.
Right, he's always been supersolid.
I was always just like he'sokay, he's okay.
And when I saw that part of themovie, everything shifted for me
.
That day, you know, there wasextra time for my 12 year old
son, tickling his back at nightbefore bed, asking him for real
(10:17):
like how was your day today, bud?
Not like all right, he's good,he showered, he's in bed.
So it's a journey in itselftrying to navigate chronic
illness and nobody has theanswers and there is no workbook
on the right way or the wrongway and you're not going to know
whether it's the right way orthe wrong way unless you live it
and you just live day to day.
Speaker 4 (10:35):
So in the intro we briefly discussed a little bit
about your journey with thyroidcancer.
Do you mind talking about it?
Speaker 2 (10:44):
It was a really quick chapter in my life.
I was working full-time at ourlocal organic grocery store out
here.
I was the grocery buyer thereand I was a full-time mom.
I was working full-time and Iwas just fatigued all the time,
just tired.
I wrote it off as I'm a momdealing with a baby with chronic
illness.
I'm a mom of a son who's eightyears old, who's playing Pop
Warner football.
(11:04):
I'm a wife.
I'm a mom dealing with a babywith chronic illness.
I'm a mom of a son who's eightyears old, who's playing Pop
Warner football.
I'm a wife.
I'm trying to keep the housetogether and work 40 hours,
right.
So I kept writing it off, keptwriting it off and honestly, I
was sitting there one day at thecomputer doing research on like
holistic medicines and thingslike that.
I felt a lump on my throat.
I immediately went into a fullsweat, panic, like my gosh.
I called my doctor, they did abiopsy on it and immediately he
(11:32):
was like this is stage onecancer.
Not even a week later weremoved half of my thyroid and
that was a nightmare.
Talk about horrible surgeriesanything in your throat, because
you have no idea how much youuse your neck muscles.
So that was a really quickturnaround, andy.
It was one week biopsy, nextweek diagnosis, following week
take the thyroid out and then itwas maybe like a four or five
week recovery.
(11:53):
But my husband allowed thattime for me to rest.
Iris Ann has always been veryintuitive.
My daughter was chronic illnessso even at two years old when I
had the surgery she was verydelicate and Iris has always
been very delicate and verysweet and very kind and very not
like most toddlers that arelike the bull in the china shop
(12:14):
kind of kids.
You know.
She's always just been verydelicate and for her at that age
to see me in the situation thatshe's usually in it was it was
neat to see that just becauseshe was so compassionate.
And but realistically, thatchapter in it was neat to see
that just because she was socompassionate, but realistically
, that chapter in my life wasvery quick.
I still get scans and thingslike that and my thyroid needs
(12:35):
to be checked.
Now that I'm enteringperimenopause which is nightmare
I have to check on my thyroidmore often because we rely on
our thyroid a lot as women.
I always have to make sure thatI keep that in check as well.
Speaker 4 (12:44):
Thanks.
Thank you for sharing.
Speaker 3 (12:48):
Thank you for asking.
I have a follow-up question foryou.
With having part of thatremoved, were there medications
that you had to go on, and whatdoes all that entail?
Speaker 2 (12:58):
Yep, I don't know if hormone medications are crazy,
because it's not aone-size-fits-all.
I was introduced to so manythings to me, so my whole entire
upbringing has been holistic,it's been alternative, it's been
only organic, no GMOs.
And when Iris was born, I triedall of that with her and none
(13:19):
of it was working and I finallyhad to say yes to pharmaceutical
medications.
I finally had to say yes to theWestern ways.
So, jen, when it came to mythyroid, the doctor was putting
me on tons of differentmedications to try to supplement
the lack of, because I only hadhalf, and it was awful.
It was absolutely awful.
I was literally losing my mind.
(13:40):
I was angry all the time or I'dhave hot flashes.
I think I was maybe 32, 32 whenI had it, and so I ended up
saying no more, I can't do thisanymore.
I did it for like six monthstrying to regulate all of these
different medications and sincethen it's been OK.
I have half a thyroid and sinceI've been 32, I've had enough
thyroid to carry me through.
(14:02):
But I'm thinking that'schanging.
Actually, as we speak, I've got15 doctor's appointments with
different doctors coming ahead.
I've been having like thesecrazy cluster headache, so they
don't know if it's hormonerelated because of the
perimenopause, or so.
I've got eye doctor, neurology.
I've got like a whole plethoraof appointments coming up.
So no medications for mythyroid right now, but I'm sure
(14:26):
that that will be something thatI have to come to terms with in
the very near future.
Thank you for sharing that.
Speaker 3 (14:33):
For those who might not know, can you explain what
Rare Patient Voice does and howit helps patients and caregivers
?
Speaker 2 (14:42):
So Rare Patient Voice connects patients and
caregivers to medical researchstudies, right?
So pharmaceutical companiescome to Rare Patient Voice
asking us for help in recruitingfor clinical trials online
surveys, zoom interviews,in-person interviews, focus
groups, bulletin boards tons ofdifferent opportunities to get
(15:03):
involved and we connect patientsand caregivers to these studies
and, in turn, the patients andcaregivers are paid for their
time.
So we pay at a rate of $120 anhour.
So say, for instance, we have aZoom meeting that is going to
be 60 minutes long.
Participants, we will send outinvites to these potential
(15:24):
participants and if they passthe screeners, then they are
invited to the study and oncethe study closes, each
individual is paid out anywherefrom $120,000 or more, depending
on what the pharmaceuticalcompanies are offering us.
So we have a panel of over100,000 patients and family
caregivers.
We take a lot of pride in that,because we work really hard on
(15:45):
the back end to make sure thatthese 100,000 patients and
caregivers are actual diagnosedpatients and actual family
caregivers that take their timeto care for their loved ones.
The last thing we want to do isallow fraudulent individuals
into a study that they have noidea about.
There's no reason that anybodyshould be doing a Crohn's
(16:06):
disease study if they've neverlived with the disease or have
ever cared for somebody withthat disease.
So we have an amazing panelmanagement team who goes through
each individual profile one byone, every single day, every
single sign up and we look forcertain red flags with these
sign ups and if they pass thecriteria, they are verified and
they are part of our panel andthen for them moving forward, if
(16:29):
we have any studies that matchtheir conditions, they are
emailed an invite that they havethe choice to open or not.
You're not committed toanything when you sign up, but
you do have opportunities toamplify your own voice in a
different way to advocate.
Before I knew anything aboutmedical research and things like
that, I only thought it wasclinical trials.
(16:49):
I thought that only clinicaltrials existed and that was the
only way that you couldparticipate in medical research.
I was definitely wrong.
There are, I mean, a simplesurvey.
Maybe a pharmaceutical companyneeds to know for a Crohn's
disease panel.
Would you be interested in XYZ,right?
So then they push that panelout to all the Crohn's disease
patients or caregivers and weanswer that maybe that survey
(17:12):
will be the reason that the nextbig breakthrough happens,
because there was a panel of 700people that said you know what?
Yes, I would definitely love tomove forward with you in this
new, this X, y or Z.
There's so many differentopportunities to get involved in
medical research.
That's one thing that I'vetaken from Air Patient Voice,
from an individual standpoint,thinking that clinical trials
(17:34):
were the only way to getinvolved in medical research.
So that's really what we do, iswe just connect the community?
Speaker 3 (17:43):
with the research.
Well, and I don't know if allof you are signed up.
If you are not, go do it.
I've done some.
I've done some on depression,on psoriasis, on rheumatoid
arthritis Super easy.
Some of them are just aquestionnaire.
Sometimes it's the Zoom.
They're all easy.
It's incredibly easy to do, andif you don't qualify, you don't
qualify.
Sometimes it's because maybethey're looking for a black man
(18:05):
and I'm a white woman.
That's okay, I don't fit thecriteria, I move on, but I think
it's great.
I love the emails that you sendout.
Sometimes I get reminders on myInstagram from you.
I love that too.
For those listening.
If you haven't signed up, wehave a link in the show notes,
so go do it.
It's super easy.
Just take the five minutes.
(18:31):
All right, this is cool.
Can you share a success storyor impactful moment that you've
experienced while working withRare Patient Voice?
Speaker 2 (18:34):
So you sent me this question and it really I had to
really think about it because Ifeel like every day working with
Rare Patient Voice pulls on myheartstrings all the time.
I feel really proud of what wedo at Rare Patient Voice.
There's so many right.
We have many differentcommunities within our community
.
At Rare Patient Voice, there'sso many right.
We have many differentcommunities within our community
.
At Rare Patient Voice on ourInstagram, One of my favorite
(18:57):
success stories is her handle.
Her name is Social Sid.
She is an advocate for the HScommunity and she did an
in-person interview for us thatwe connected her with and she
had to fly to Atlanta, Georgiaor something.
There was a handful ofindividuals in the HS community
that follow us on Rare PatientVoice that got the green light
(19:20):
and they went and did thisin-person interview and there
was a whole room filled of themand not only have they all
become best friends, but itreally was a catalyst for their
I don't want to say theirsuccess on social media and
their their advocacy on socialmedia, but it really upped their
game.
(19:40):
It was a total game changer forthem and they were able to come
back from that.
They've been to so manydifferent hs community events.
Now they've created their ownevents and Social Sid always
brings it back to us, Likewhenever she's on podcasts or
being interviewed.
She always says Rare PatientVoice helped me get to where I
am today, simply because shesigned up and was able to use
(20:04):
her voice and then took that andran with it.
Right, Just building theconfidence in individuals.
Our community on Instagramgrows every day.
I personally try to make ourInstagram relatable.
I don't want it to be filledwith just we're research.
You know we're helping researchcompanies fill studies.
You know you get a number.
You get a number.
You get a number.
I want to know, Jen, what's yourstory?
(20:25):
You know, and I reached out toJen probably two years ago,
Right, and now we talk aboutwildfires and you know, I see
something going on and I quicktext, Jen, like, oh my gosh, did
you hear about this?
Or you know, I want to knowwhat Andy's story is and Allie's
story is, and I want to knowthat your daughter is going
through similar things that I am.
I'm not just some AI bot behindInstagram, right?
(20:47):
We're a real community, we'rereal people, we community, we're
real people, we have realstories and we're real
individuals, right.
So I like to feel our Instagramis like a success story too,
because it's kind of my baby.
Rare Patient Voice came to me.
They found me through my socialmedia because one of the women
that works here at Rare PatientVoice she also had a son who had
the same diagnosis as Iris, soshe had been following Iris
(21:08):
literally since you know we werelooking for a diagnosis.
She reached out to me I guessit was right after COVID, I
think because I wasn't working.
She had asked if I could startan Instagram for them or this
and that I wasn't looking forwork.
And then it just turned intoyes, and can I have TikTok and
can I do this and can I do that,and it's just been so much fun,
(21:29):
I agree.
Speaker 3 (21:30):
I think it is a success story and you are
talented at it.
They have the right persondoing the job.
You are engaging, you're fun,you talk to people, you reply
back to people and that's whatmakes you you.
That's what makes us special.
Speaker 1 (21:46):
Yeah, thank you.
Speaker 3 (21:47):
How has social media, especially platforms like
TikTok and Instagram?
How have they helped youconnect with the chronic illness
?
Speaker 2 (21:53):
community.
Well geez, in this day and ageit's so easy.
I mean literally, you just typein a condition and you find
your community right.
I've always had a really chattymouth, right, I've always been
hey, I'm here that kind ofperson.
So for me, social is a lot offun to connect with individuals,
(22:14):
to network, to find newresources.
When I find new things, I wantto tell everybody.
I want our community, our PV,to know that I found a new
gluten-free product that mydaughter might be able to have.
That's not only gluten-free,but it's peanut-free and
egg-free and dairy-free andfree-free-free.
Like social media obviously hasits ups and downs, but I feel
like, if you use it correctly,it's the greatest thing to
(22:36):
happen to the human race,because you have instant
gratification, you have instantanswers, you have instant
connections.
I often have people reach outto me on Instagram asking how do
I start?
How can I start my advocacy?
Where do I start?
And I've been there.
I literally say share yourstory, start with your story
right.
Start with your story.
(22:57):
You have a story to tell, youknow your story Right, so start
there and then you will findcommunity and the community will
come to you Right?
I love social media.
Not everybody loves socialmedia.
You know my husband isn't verygood at it, but I love it Right.
So social media for me is thegreatest, and to be able to be a
part of it every single dayit's such a blessing.
Speaker 3 (23:18):
I couldn't agree more .
Anyone else want to chime in?
Then TikTok.
Speaker 1 (23:21):
I love it.
Yes, tiktok, I just I love howyou said this in the beginning
of the podcast.
Like you were going throughthis alone with your daughter
getting diagnosed, and then youreached out on social media and
got a plethora of DMs and peoplehelping you.
I always tell people who justgot diagnosed with anything or
who is in the process of gettingdiagnosed to find your people
on social media.
(23:41):
Like you said, just hashtag.
Like when I was startingEnverol, I hashtag Enverol and
now I'm best friends withsomebody I found injecting and
that was like five years ago.
So, yes, please contact orhashtag whatever you have,
whatever you're on, and connectwith people who understand what
you're going through.
And then, stacey, do you haveany advice for parents who are
(24:02):
going through what you wentthrough with their children
trying to get a diagnosis, anyadvice that you would give them?
Speaker 2 (24:07):
I don't know if I'm the person to ask that, because
I got angry and once I startedto get angry, I started to get
to where I needed to go.
I think being complacent orcompliant with something that
doesn't sit right in your gut.
You need to listen to that.
If you're up at 2 am and thedoctor sent you home at 4
(24:30):
o'clock in the afternoon and youstill don't think something's
right, get back there or go to adifferent hospital and ask as
many questions as you can.
If you don't know the questions, turn to your online community
and ask for help.
There's always somebody willingto help and this is going to
sound weird too, but chat GPT.
If you ask chat GPT, what arethe top 10 questions that I
(24:52):
should go in and ask my doctortoday about this?
That and the other ChatGPT willbreak it down for you and say
here are the top 10 questionsyou should ask your doctor today
, right?
So if you don't feelcomfortable asking for help
within a certain community,chatgpt can totally help you.
I'm not always team AI, butthere is a time and a place for
it.
I think if you're not confidentenough yet in taking that step
(25:17):
for asking for help withdifferent communities you can
turn to that.
That's a great asset to use.
I think listen to your gut isreally what I'm going to say.
If you feel you're sitting inthere and there's a doctor not
talking to you the way that youwant them to talk to you, or a
nurse comes in and you don'tfeel confident that they're
going to be okay handling yoursituation for the next 12 hours,
you can ask for a new nurse.
(25:38):
That's okay.
You have rights within themedical industry and I think
that if we had more peopleadvocating for individuals that
it's okay to say no or it's okayto say yes, then I think we
would all feel more confidentwalking into a doctor's office,
right?
So I just feel, doing yourresearch.
Doctors will say don't doresearch, I do your research, do
(26:02):
your due diligence, learn asmuch as you can about your
condition and go from there.
Speaker 4 (26:09):
Stacey, your personality is contagious.
It is making my heart so warm.
Okay, it's making my heart sowarm.
Okay, it's making my heart sowarm.
What is Stacey's goal for thefuture?
Personally, professionally,with your family?
Where do you see you growing inthe future?
That's a great question.
Speaker 2 (26:26):
I've been with Ray Patient for three years.
This year we'll make four.
I think I love collaborations.
I want to do morecollaborations.
This is me getting outside thebox.
This is my first podcast withJen.
This is like probably thegreatest start to podcasts.
I want to do a lot morecollaborations.
I want to allow the communityto give me ideas on how we can
(26:47):
expand, how we can betteraccommodate them.
I am a voice for the community,so use me I'm in no rush with
Rare Patient Voice to run asfast as I can.
I'm very comfortable with whereI'm at right now.
I think fostering and tidyingup all the little corners of our
social media and our communityI think is one of my biggest
(27:09):
goals for 2025 with Rare PatientVoice.
My personal goal is to get evenmore healthy with my marriage.
My husband and I have beenmarried for almost 20 years.
I feel like the past six monthshave been like really frayed.
We're doing tons of differentthings together that we wouldn't
normally do.
I think for 2025, personally,will be my marriage and my
(27:33):
self-care.
I have a lot going on with menow medically.
I want to make sure that I nipthat in the bud now so that here
comes summer, and summer is myfavorite season of all.
I'm ready for it.
I think for me, this year isjust I don't have big goals for
2025.
I'm very happy with where I'mat right now.
I feel good mentally, I'mfeeling really good physically.
(27:54):
I kind of just want to tastethat for a little while and I've
got not huge goals for 2025,but the goals that I've set I
think are going to be achievableand I look forward to more
collaborations and just tons ofdifferent networking and just
making my voice even louder foreveryone.
Speaker 3 (28:12):
I would like to see you at events, so like when I
went to ACR Convergence, I thinkit'd be awesome to see you guys
there with the table set up.
Speaker 2 (28:19):
Yeah we do do events, jen, jen and if you ever go on
and you see, brooklyn runs ourFacebook, brooklyn and Jen are a
mother-daughter duo, but we arethe three of us are a team and
they travel coast to coast doingdifferent shows.
I think, jen, I think she didclose to 22 patient events last
(28:42):
year.
Jen, if you see one, we're like, wow, rare patient voice should
probably be here.
Send it to me, because we arealways looking to travel.
I don't really get to be thatperson because I live in the
middle of nowhere and it's kindof expensive for them to get me
places, but the louder we areabout getting me to places is a
good thing.
If you see any, send them ourway, because Jen and Brooklyn
are always looking.
We're already building our listof where we're going in 2025.
(29:04):
We have a bigger budget thisyear, so we are looking to
spread our wings and get allover the United States.
We're looking for differentsocial media conferences maybe
we can attend this year.
Definitely patient events,caregivers events.
We also do client events.
But that's Jen and Brooklyn,and I kind of stay more towards
(29:25):
the patient and caregiver sideof things.
I mean, rare Patient Voice isall over the place.
I guess maybe I should be alittle bit more loud on sharing
that on social media.
Speaker 4 (29:31):
That is so funny that you would bring that as a segue
, because my next question wascan you tell the people how they
can stay connected with you sothat they could be all wrapped
in this contagious personality,because they need a dose of it
for real.
Thank, you.
Speaker 2 (29:47):
We are all over social media.
We're obviously on the biggestplatforms.
We're on Facebook, instagram,tiktok.
I just started Blue Sky.
We're on Fred's what else?
Pinterest, teams we're not onRed, we're on Teams.
Sorry, but yeah, you can followus on all of those.
Know that if you are onInstagram and you DM, it's me
(30:09):
that you're going to talk to100% of the time.
There's nobody else that runsthat account.
You will always talk to me.
I am kind of in the middle ofnowhere, so I'm a five hour
difference right now from theEast Coast.
So if you're laying in bed atnight and I don't get back to
you, it's simply because ourtime difference.
But I have my phone on me allthe time and I hear you dinging
(30:30):
and I usually don't ever letmore than six or seven hours go
before replying.
Facebook is Brooklyn, so ifyou're ever on Facebook and
you're looking to talk tosomebody, you'll be speaking to
Brooklyn.
Tiktok is always me.
Threads is me.
I have a hard time with Threadsand Blue Sky.
I don't.
Are there any tips or tricksand anything for those those
guys?
No, what is Blue Sky?
(30:52):
Blue Sky is kind of like.
Speaker 1 (30:54):
I have Blue Sky.
Speaker 2 (30:57):
It?
What is blue sky?
Blue sky is kind of like I haveblue sky.
It's kind of like x or twitter.
It's kind of like a.
It's kind of like threads.
I saw like I saw it a week agowhen everybody was getting ready
to do the tiktok ban.
Everybody's like, follow mehere, follow me there.
Speaker 1 (31:05):
So I started all these social medias or on blue
sky, but it's not in there forme it's like a breath of fresh
air because I follow like naturestuff on there, science,
science stuff.
So when I just want to get awayfrom the craziness of social
media, I go there and I look atpics of like animals and space
and I'm like I love blue sky.
Speaker 2 (31:23):
But yeah, start to love it, then I'm going to
change my attitude around it.
Speaker 3 (31:27):
Okay, I think we all need to give it a better chance.
Okay, well, thank you so much,stacey, for sharing your journey
and all the incredible workthat you do at Rare Patient
Voice, dedication to amplifyingthe patient voices and building
community All of it is trulyinspiring.
We're grateful for all that youdo and for having you on the
(31:47):
podcast today.
Speaker 2 (31:48):
Well, thank you so much for having me.
I really do appreciate it.
I was very nervous when we gotin here, but now I feel like,
wait, are you guys going to callme next week so we can all hang
out?
Speaker 3 (31:55):
nervous when he got in here but now I feel like wait
, are you guys gonna call menext week so we can all hang out
?
Yeah, I know we're gonna haveto come up with like another
option.
Speaker 2 (32:01):
I love this a lot more often oh yeah, or maybe
we'll just go live on instagrama lot more or something.
I like that idea too.
Speaker 3 (32:09):
Yeah, we never do that on my spinny sisters, so
maybe we can do that yeah thatcould be fun oh, it's growing.
Thank you everyone for beinghere.
I appreciate every single oneof you, ladies.
You all are amazing and I loveyou to pieces.
Speaker 2 (32:24):
Yes, thank you, girls .
So much for having me today.
Speaker 3 (32:27):
Until next time don't forget your spoon.
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