September 29, 2025 • 30 mins
In this episode of The Paid Leave Podcast, we are focusing on Sickle Cell Disease (SCD) September is National Sickle Cell Awareness Month. Sickle cell disease affects about 100,000 people in the United States; more than 90% are non-Hispanic Black or African American. Many people with Sickle Cell Disease do not receive the recommended healthcare screenings and treatments mainly because of social barriers.
My guests are Dr. Genice Nelson. Dr. Nelson is the Nursing Director at UConn Health-at the New England Sickle Cell Institute, Hemophilia Treatment Center, and Outpatient Behavioral Health Programs.
Daisha Dillon is a mom who was diagnosed at birth with sickle cell disease and has been suffering since she was 6 months old. She always wanted to be a mom and has a healthy daughter who was born without Sickle cell disease. Daisha is seen at the New England Sickle cell Institute and gets her treatments for sickle cell and pain there at UConn Health. We discussed what sickle cell disease is and how it effects the body. Dr. Nelson is aware of CT Paid Leave, and the benefits it has for the patients she treats and their caregivers. Daisha's health has been improving with the newer medications that have become available to combat the symptoms and the pain.
To get more information about the New England Sickle Cell Institute: New England Sickle Cell Institute | UConn Health
For more information about Dr. Genice Nelson: Genice Nelson, DNP, MSN, APRN, ANP-BC | UConn Health
For more information or to apply for benefits: ctpaidleave.org
https://ctpaidleave.org/s/?language=en_US
https://www.facebook.com/CTPaidLeave
https://www.instagram.com/ctpaidleave/
https://twitter.com/CTPaidLeave
https://www.youtube.com/results?search_query=ct+paid+leave
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Nancy Barrow (00:01):
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family and workplace. Welcome toThe Paid Leave Podcast.
September is National SickleCell Awareness Month. And sickle
cell disease affects about100,000 people in the United
States, and more than 90% arenon Hispanic, Black or African
American, and an estimated 3.3%to 9% are Hispanic or Latino.
(00:47):
And many people with sickle celldisease don't receive the
recommended health carescreenings and treatments,
mainly because of socialbarriers. And my guests will
have lots to say about sicklecell disease. Dr. Genice Nelson
is the nursing director at UConnHealth at the New England Sickle
Cell Institute, the HemophiliaTreatment Center, and Outpatient
Behavioral Health Programs. AndDaisha Dillon is a mom who was
(01:10):
diagnosed at birth with sicklecell disease and has been
suffering since she was sixmonths old. She always wanted to
be a mom and has a healthydaughter who was born without
sickle cell disease. And welcometo The Paid Leave Podcast. I'm
so happy to have both of youhere.
Genice Nelson (01:22):
Thank you for having us.
Nancy Barrow (01:24):
Let's talk about this. Dr Nelson, tell me what
sickle cell disease is.
Genice Nelson (01:29):
So sickle cell disease is an inherited genetic
disorder that affects the redblood cells, and so it's
important for people tounderstand that it's not
something that you can catch,nor is it something that you can
develop. Should you havesomething that's called sickle
cell trait. So if you are notborn with it, then you cannot
have sickle cell disease. But itis one of several different
(01:52):
genotypes of a red blood celldisorder that can cause
differences in pain, anemia, andjust really affect people's
lives in a chronic way.
Nancy Barrow (02:03):
And there's no cure for sickle cell is that
right? Just treatments?
Genice Nelson (02:06):
There is a cure for sickle cell disease. It is
not universally available, so abone marrow treatment from a
matched donor can cure sicklecell disease. It is a very long
proliferative process. Is not aneasy process, but there is
potentially a cure through thebone marrow transplant. Again,
(02:27):
it's not widely available,because you have to have an
identical match for theindividual. So ideally they have
same mother, same father, andthen you match them genetically.
It's a process that you gothrough. Then you have to treat
the individual who has sicklecell disease, because they have
(02:48):
to literally go through aprocess where you kill off their
own bone marrow, because theirbone marrow is only producing
sickled red blood cells. Andonce you do that, then you're
able to collect the donor, thebone marrow donor, from the
sibling that's going to donate,and then they're able, you know,
through medicines and differentprocesses, infuse that into the
(03:12):
patient. Once that graphs to theindividual, then they can
overcome their sickle celldisease. They'll have what's
literally known as sickle celltrait because their underlying
bone marrow disease is stillthere.
Nancy Barrow (03:26):
Wow, that is so fascinating. I didn't realize
that there was a cure for that.
And is it cost prohibitive? Isit covered under insurance?
Genice Nelson (03:34):
There are extreme costs associated with it. But
the problem, again, is findingthose matches because you made
the same mother, same father,but the differences in genetic
material is what limits peoplefrom being able to have a bone
marrow transplant. There aresometimes you're able to find an
anonymous donor that maygenetically match you, but you
(03:57):
have to have a genetic match inorder to do a bone marrow
transplant. There are somestudies where they did half
genetic matches, and it hasn'tbeen as effective. But if you're
able to be one of thoseindividuals, and there are quite
a few individuals who havesuccessfully had bone marrow
transplants, we ourselves at NewEngland Sickle Cell Institute
(04:18):
have had two patients who havesuccessfully had a bone marrow
transplant. So it is possiblefor it to happen.
Nancy Barrow (04:23):
For me, the only person I knew growing up was T
Boz, right? So I knew from TLC,she had sickle cell, and she
used to talk about how painfulit was and just how debilitating
it was, and that there was nocure. So I always felt like, oh
gosh, there's no cure for her,and I was just devastated for
her.
Genice Nelson (04:42):
She visited the state of Connecticut a couple of
years ago through a concert, andthrough my association with the
National Sickle Cell Diseaseorganization, they put me in
touch with her. She actuallyended up having a medical event,
and I stayed with her the entirenight to help her get through.
Medical event. And when I tellyou she is one of the sweetest,
(05:03):
kindest individuals you couldever possibly meet, she is
definitely that person, astaunch advocate, had an ability
to interact with her, toactually give her some teaching,
for some things that she coulddo for herself, given the
lifestyle that she has being inentertainment, and hopefully
she's taken some of those thingsto heart and has incorporated
(05:26):
them to help her have a better,less painful lifestyle as well.
Nancy Barrow (05:30):
Wow. How fascinating is that? What do you
do at the New England SickleCell Institute at UConn Health?
What do you do there as theNursing Director?
Genice Nelson (05:39):
So as the nursing director, I oversee our clinical
and programmatic operations.
What it means is that I'm hereto help ensure that our patients
are getting high quality care,that they're engaged in care,
that we're doing the things thatwe should do for every
individual with sickle celldisease. So an individual with
sickle cell disease, there arecertain screening examinations
(05:59):
that they should have so that wecan check their heart, their
lungs, their eyes, depending onthe different kind of sickle
cell disease that they have,we're plugging them in into
primary care, because as peoplelive to be older, all of the
things that plague the generalpatient population can also
plague individuals who havesickle cell disease. So at a
certain point, they have to bescreened for breast cancer, they
(06:22):
need to be having prostateexams, they need to have
colonoscopies, all of the thingsthat the general patient
population have. And then wereally focus on trying to manage
their individual sickle celldisease and the different things
that they have. So you haveindividuals who may have a
history of stroke, and sothere's an indication for a
person who has had a stroke,which means that they need to be
(06:45):
on chronic blood transfusions.
So we manage those chronic bloodtransfusions. We may have
somebody who's pregnant, andDaisha can share her story with
you how we help to manage herpregnancy, but we just try to
help ensure that our patientsget, high quality care, that we
help them to have as lesssymptoms as possible and just
(07:08):
really be engaged in theirfamilies and their home lives.
Nancy Barrow (07:11):
Yeah, and how do you diagnose it? Is it a simple
blood test?
Genice Nelson (07:15):
So it is a simple blood test an individual who has
sickle cell disease should havewhat's called a hemoglobin
electrophoresis test. Yeah, it'sa mouthful. It's a mouthful.
What it does is it identifiesthe different hemoglobins that
individuals have. So anindividual who does not have
sickle cell disease hashemoglobin AA, because you
(07:36):
inherit one gene from your mom,one gene from your dad. So an
individual who has sickle celldisease, they have two different
types of or they may have thesame type, SS or SC. There's a
bunch of different types ofsickle cell disease, but it
teases out which kind ofhemoglobin they have. And so
that's how you determine ifsomeone has sickle cell disease
(07:58):
or sickle cell trait. And oncethat individual is identified,
then through the state ofConnecticut, we notify through
newborn screening process, theparents that their child has
sickle cell disease because theyneed to be engaged in care
sooner rather than later.
Nancy Barrow (08:16):
And do we know why that black and brown people are
affected so much more with thisdisease.
Genice Nelson (08:22):
It depends on where you are globally as to
who's affected by sickle celldisease. Because sickle cell
disease, I know people thinkthat is a black and brown
disease, but it affectseveryone. So we have in our own
program people who are Caucasianwho have sickle cell disease as
well. So I need people tounderstand that. So, depending
on where you are, globally,depends on what sickle cell
(08:44):
disease looks like. Think aboutsickle cell disease as a natural
genetic mutation that occurredas protection against malaria.
And so those malaria belts, youknow, Africa, Turkey, India,
those are the countries thatwere malaria was prevalent, as
sickle cell trait is protectivefrom people dying from malaria,
(09:06):
sickle cell disease itself isnot and so that's how sickle
cell disease was propagated, assickle cell trait was protective
from malaria.
Nancy Barrow (09:16):
Let me ask about the treatments, because I think
that that that's a loadedquestion, right? Because I think
depending on what you can do,there are different treatments,
right? Like, is it normal to geta blood transfusion and IV pain
medications, or is gene therapycoming about and stem cell
therapies?
Genice Nelson (09:34):
So let's take it one step at a time, so an
individual who has sickle celldisease may or may not need a
blood transfusion. It depends onwhat their symptoms in or
medical problems are. So if youhave a person who, like I said,
who has had a stroke before, theprotocol or treatment for that
individual is to prevent themfrom having another stroke. So
(09:57):
how do you prevent them fromhaving another stroke? You. Want
to suppress as much as possiblethe ability of their blood to
sickle so you decrease theirsickle blood by giving them non
sickled blood, and so that willhopefully prevent them from
having another stroke. So for anindividual who may have a
medical emergency called acutechest syndrome, where is like
(10:21):
having pneumonia, except it'ssickled cells that are clogging
their lungs there that's amedical emergency, which may
require a full body bloodtransfusion, and so, depending
on what issues an individual hasmay or may not require them to
need blood for a woman who'spregnant, who sometimes their
(10:43):
baby may not be developingenough, because, again, that
individual has sickled blood andnon sickle blood is more
beneficial because it can carrymore oxygen and has more
hemoglobin. You may need to givethem blood transfusions to
support their pregnancy, theother medications that are
available. So for instance,Cascavey and Lefjevy those are
(11:06):
the two stem cell or newertherapies that are available. So
they are very, very expensive,on average, about three to $5
million but if you think aboutwhat this can do, this, these
treatments take individual stemcells and they alter their stem
cells so that they no longerhave sickle cell disease, and
(11:28):
then they re-infuse it into thepatient. Now I know I'm making
it sound very, very simple, butthat patient has to go through a
deconditioning process, because,again, their body is making
sickle cells, so you have tokill off their body's ability to
make those sickle cells, whichmeans they may have a very
prolonged hospitalization, theymay get very weak, they could
(11:49):
possibly get sick. You have tokeep them in a protected
environment, because they'regoing through this conditioning
with some chemotherapeuticmedications to prepare their
body for these transformed cellsthat will now hopefully take
place and replace their sickledcells. So not necessarily easy
(12:10):
decisions for individuals tomake, but they can be life
changing decisions onceindividuals have experienced
this, and depending on yourproviders, we don't offer that
right now, yeah, but we areprocess of partnering with our
bone marrow treatment programthat is in the process for
accreditation. So we're lookingto next year, be able to
(12:31):
possibly start offering thesetherapeutics to our patients as
well, which we're extremelyexcited about, because these are
life changing events and to beable to affect someone's disease
to the point where they're nolonger hospitalized, they're no
longer in pain, they no longerneed blood transfusions. It's an
amazing opportunity for them tohave a different scope and
(12:56):
perspective on their life,because now they can go and live
as normally as you or I, withoutthe complications that they're
currently facing.
Nancy Barrow (13:05):
Daisha, why don't you tell me about your journey
with sickle cell disease?
Daisha Dillon (13:10):
Well, it's been an up and down journey, as you
know, I was diagnosed at sixmonths, so that's when I had my
first crisis, as my mom says,and I've just been living with
it till 35 which I am now, gooddays, bad days and in between.
Nancy Barrow (13:31):
Yeah. And so like a typical day for you, do you
have to get hospitalized? Do youget blood transfusions?
Daisha Dillon (13:37):
All of the above?
So it was a point where I wasgetting blood transfusions once
a month. I no longer get those.
Thank you, Jesus. When I do geta monthly medication, I believe
the name is Adapvio, thatdecreases my crises, and I am on
my chronic pain medication tohelp me, well, I'll be able to
(13:59):
live as normal as possible. Beable to go to go to work, go on
vacation.
Nancy Barrow (14:04):
And that's amazing, right? So if you have
this medication and you don'tneed blood transfusions, that's
life altering. And so doctor,these are all things, yeah,
these are all things that you asa team work on with Daisha.
Genice Nelson (14:20):
Absolutely! So the medication that dish is
talking about, Adaptvio thegeneric name is Chrisamizalab.
Is a medication that is infused,meaning that it is given through
an IV once a month. Thismedication works kind of like
and I when I explained it to apatient, I explained it to think
of your body as being a car, andyou need oil to protect your
(14:42):
engine. So in in this personwho's now the car, the oil, or
the Adaptvio, encompasses thered blood cells so that they
don't stick together. They don'tstick together. Now they're able
to flow freely, and that helpsto prevent the pain from
happening. So the medication, byselection, or P selectin
(15:05):
specific prevents the cells fromsticking together and sticking
to the tissue lining, whichprevents the cells from clumping
together and causing pain,causing pain. So that's why I
use that a car and oil, yeah,because that's really a good
visual for how it kind of works,
Daisha Dillon (15:24):
And it works!
Nancy Barrow (15:24):
And it works, and so are you. Are you? Is your
pain a lot less than it used tobe Daisha?
Daisha Dillon (15:31):
100% I have a job. It was a point where I
didn't have a job before. It wasa point where I was going to the
sickle cell clinic maybe twice,three times a week to get a new
pain medication. I probably gothere once a month, if that, for
pain medication.
Nancy Barrow (15:47):
That's like altering and being able to have
a job is is crucial, right,especially since you're a mom.
So tell me about that journey ofbecoming a mom, because it's
complicated with sickle cell.
Daisha Dillon (15:59):
Definitely, just because when you have sickle
cell, one of the things thatthey tell you is that, not that
you can't have kids, but thatwould be very, very difficult
for you to have kids, that itwas something that you can die
from, something that youshouldn't do. It's something
that would be life altering. Soit was one of those things that
(16:20):
when I got pregnant, I was like,Oh, what do I do now? And I was
very, very nervous, and it wasso when I talked to Janice, and
I think that what she told mewas, you're not the first person
to have sickle cell have a baby,and you're not going to be the
last. And that just comfortedme. And she created a whole
treatment plan so that I couldhave a healthy baby girl, and I
(16:42):
did!
Nancy Barrow (16:43):
And that's amazing. So did you have to go
off medication when you werepregnant? And did that change
the pain that you were in, ordid it change anything?
Daisha Dillon (16:52):
Yes, and no, I think we added medication and I
didn't have to go off on my painmedication, because they were
able to find a way for me totake it so that my daughter
didn't get addicted tomedication. If that makes sense,
gotcha. Gotcha as a narcotic.
And when she was born, theylooked after her to make sure
she didn't have any withdrawalsymptoms, and she didn't.
Nancy Barrow (17:15):
So that's is that a concern for you doctor, when
there's a sickle cell patientthat is pregnant that she may
pass that gene on to the baby.
Genice Nelson (17:23):
If you have an individual who has sickle cell
disease, as a mom, she isdefinitely going to pass on one
half of her gene set. So if shehas SS disease, she can only
pass on an S if she has scdisease, then she could pass on
an S or a C. So it depends onwhat kind of sickle cell disease
the individual has, but they'regoing to pass on what it is that
(17:44):
they have genetically, notnecessarily concerned about if
mom has sickle cell disease.
What we what we tend to focuson, is testing the dad. What
does dad have? So when we notsure what dad has, we say, hey,
father of the baby, come on in.
Let's get some blood. Let's seewhat you got going on so we can
make a determination of whetheror not the baby may possibly
(18:07):
have sickle cell disease,because a baby has sickle cell
trait that, in itself, doesn'tnecessarily cause health issues,
but it also gives mom a peace ofmind that she doesn't have to
worry about baby having diseaseversus dad having sickle cell
trait and mom having sickle celldisease, then, you know, the
likelihood is very high thatthey could have a baby with
(18:28):
disease, so we just focus ontesting dad so we can relieve
mom's fears.
Nancy Barrow (18:33):
What about clinical trials? Do you offer
those for sickle cell disease atUConn Health?
Genice Nelson (18:40):
We are research Central!
Nancy Barrow (18:43):
I know you are!
Genice Nelson (18:43):
When it comes to clinical trials. We, we
currently have four differentclinical trials that are open
right now. We, we prideourselves in trying to ensure
that we bring to our patientseverything that we can bring to
our patients, and in order forthem to have access to newer
(19:04):
treatments, better treatments,we have to perform clinical
trials. And in order for thoseclinical trials to be
successful, you have to havepatients who have sickle cell
disease. So we encourage ourpatients to participate.
Typically, they're knocking downthe doors. Hey, do you have a
child that I can participate in,which is fantastic, because the
only way that we're going toimprove their life the care that
(19:27):
they're receiving is throughthese trial and error processes.
Again, we're looking to partnerwith our bone marrow treatment
program so that we can bring thestem cell therapies to our
patients, we're always lookingfor clinical trials that are
going to benefit our patient insome way, shape, form or
(19:47):
fashion, whether it impactstheir hemoglobin, if it impacts
their pain, if it impacts theirdisease in any way, if it's
something that we feel isbeneficial to our patients, our
medical director. Dr berendaMaryam is a very serious
advocate and component of makingsure that we are viably in the
(20:10):
research space on a daily basis,and we have a whole research
team of individuals that arededicated to our clinic
specifically for research.
Nancy Barrow (20:21):
Yeah, it's amazing. Daisha, you were
talking about having a job, andhave you used Connecticut Paid
Leave?
Daisha Dillon (20:30):
Yes, I actually used Connecticut paid leave when
I had my daughter. Because whenI had my daughter, I think I had
her at 36 Well, I know I had herat 36 weeks, and I wasn't ready
to leave work. I wasn't preparedor anything. But Connecticut
paid me was actually prettyeasy. All I did was contact my
(20:51):
HR. They gave me the paperwork,and then I brought it to Teresa,
which is the sickle cell socialworker, and she, like,
literally, filled out the paperfor me, walked me through it,
and it was done. Oh, it's sogood. enough to worry about,
like, oh my god, I'm gonna getpaid, and not to worry about,
like, filling out any morepaperwork. Literally, I went
(21:12):
into the hospital and had mybaby girl.
Genice Nelson (21:15):
Our social worker does yeoman's work when it comes
to taking, yes, patients. She ison top of every possible
resource possible. And just likeDaisha said, she doesn't just
give them the set of paperworkand say, Here you go. Go fill it
out, she is hand in hand withthem to make sure that the
paperwork is filled outcorrectly, that it is filed and
(21:35):
that it goes through tofruition, that she knows that
it's been approved and what theyhave access to. So I give kudos
to Teresa. Works every singleday, and it is absolute pleasure
to work with social workers likeher and Emily Baker, who are so
dedicated to our patientpopulations.
Nancy Barrow (21:52):
Well, those women, they get gold stars from
Connecticut Paid Leave for beingable to help people fill out
that paperwork when they can't,you know, when it's when it's
you know. And the stress too, isis something that can, that
exacerbate the symptoms ofsickle cell?
Genice Nelson (22:06):
Absolutely, it can. Yeah, emotional stressors,
physical stressors, thetemperature, so when it gets
very hot, when it gets verycold, things that you or I don't
take a take into account and howit physically bothers us, can
trigger an individual who hassickle cell disease to have a
painful crisis and end up in theemergency department, or even
(22:28):
hospitalized.
Nancy Barrow (22:29):
Oh my goodness, yeah. Has that happened to you
Daisha?
Daisha Dillon (22:32):
Multiple times.
Multiple times!.
Nancy Barrow (22:35):
Is it the stress that sets you off, or is it the
temperature that's reallyinteresting.
Daisha Dillon (22:40):
It could be anything. I'm going to Disney
World on Saturday, and I'mnervous.
Nancy Barrow (22:44):
Did you ever think that you'd be able to go to
Disney World and have yourdaughter with you?
Daisha Dillon (22:50):
Have my daughter with me, no! Because, like I
said, they for so many years, itwas like, Oh no, you shouldn't
have a child. So I just, youknow, okay, okay, it wasn't one
of the things that, like Iwanted it, but it wasn't one of
those things. I was like, okay,you know, I'm trying to have a
child, just because all of thedoctors that told me that I
(23:10):
shouldn't.
Nancy Barrow (23:11):
And so now this is going to be a different
experience for you.
Daisha Dillon (23:14):
Definitely, and then a lot better predicament,
and a lot better space of myhealth. That's definitely so
definitely, I can say that.
Nancy Barrow (23:23):
And did you ever go to a support group? Or do you
recommend that?
Daisha Dillon (23:27):
Yes, I do. I definitely recommend support
groups like having friends thathave sickle cell disease,
because there's some things thator somebody's that you'd like.
Okay, what is this? I've neverfelt this before, and it just
feels good knowing somebodyOkay, no, I've had that before.
That is sickle cell. You can goto the clinic, tell them about
it like it just reassures you.
Nancy Barrow (23:47):
Yeah, there's strength in numbers, right? Like
so and and there's comfort inknowing that you're not alone in
this.
Daisha Dillon (23:53):
Definitely, it's always good to have support too,
because there's some days whereyou just feel defeated. You just
feel defeated, and it's up tothat person to say, Nope, you
got this the causes, it will goaway. You know, it's not gonna
be here forever. You know, holdyour hand. Get you through it.
It's times where I don't want togo to the hospital, and because
(24:15):
I'm I'm just tired of going, andI know that I need to go. And
then I'll call a friend andlike, nope, come on. We're
going, we're going.
Nancy Barrow (24:23):
Yeah, it's a lot when you get this diagnosis.
What about mental health Genice,what do you talk to people
about? Because living withchronic pain is exhausting and
it's awful, and going tohospitals is is tiring, and you
don't want that. How importantis it for patients and family
members even to get mentalhealth support?
Genice Nelson (24:42):
Part of our process for when our patients
come in is to ask thosequestions, are you feeling
anxious? Are you feelingnervous? Do you feel depressed?
Are you having sleepdisturbance? Do you have
suicidal ideation? And it isokay to acknowledge that you may
have to some degree any of thisor none of this, our social
(25:03):
worker does some psychotherapywith our patients. We do refer
to our outpatient behavioralhealth psychiatric programs as
well, but we do tell ourpatients there is help should
you need it. And we try toscreen for that, because we know
living with a chronic disease,for one thing is not easy at
all. Living with acute, chronicpain is even more difficult on
(25:28):
top of it, then when you have adisease where you know people
like days of her she shouldn'thave a baby, or she could die at
a young age, those things startto burden individuals, and as
they get older, it can make themmore anxious or nervous about
what their life trajectory is.
And so we try to intervene wherewe can and say, Hey, let's
(25:48):
partner with this mental healthgroup or that mental health
group to see where we can we cantalk through some of these
things. Sometimes people needsome medications because anxiety
and depression is real, and weas a as a society, have really
acknowledged that given covid.
But we still need to make surethat services are available to
(26:11):
people, and as peopleacknowledge that there are more
and more psychiatric issues thatare being uncovered, there are
less and less servicesavailable. So we really have to
be diligent to make sure that weare really serving the whole
individual, not just their pain,but their mental health as well.
Nancy Barrow (26:28):
I think that's so important. And Connecticut Paid
Leave also covers mental health.
We tell people to always takethat FMLA to get their job back.
So take it together. FMLA andConnecticut Paid Leave because
we do the income replacementportion. So take them together.
It's really important that youknow this, since you're working
and you're paying into thisprogram, Daisha, that you can
take this program for manyreasons, and for long periods of
(26:52):
time if you need it shorterperiods of time, intermittently
or from a reduced schedule fromwork. There's a lot of
flexibility with ConnecticutPaid Leave, so make sure that
you talk to that social workerand and you find out if you need
anything from us.
Daisha Dillon (27:08):
I'll have to look into that. Yeah, intermittent
leave.
Nancy Barrow (27:11):
How important are programs like Connecticut Paid
Leave to patients and theircaregivers?
Genice Nelson (27:16):
For many of them, it can be the mind relief that
they need to know that ifthere's a medical emergency or
something that takes them out ofwork for an extended period of
time, or affects their income inany way, shape, form or fashion,
they have something to back themup. And we do have the
information for Connecticut PaidLeave in English and in Spanish
hanging in our waiting room sothat is visible for all of the
(27:39):
patients every single time theywalk in the doors.
Nancy Barrow (27:41):
What are your hopes for national sickle cell
Awareness Month?
Genice Nelson (27:45):
Well, I have two hopes. One of the hopes that I
have is that individuals whohave sickle cell disease, as
I've said, need blood. So one ofthe hopes that I have is as and
one of the issues thatindividuals who have sickle cell
disease who need blood is thatthe black community does not
donate, so the blood pool ismostly Caucasian, and so there
(28:09):
are some very tiny geneticdifferences in the blood that
causes individuals who havesickle cell disease over time to
develop antigens or allergies toblood. So if I could do
anything, I would encourage theblack community to come out and
donate blood and earmark itspecifically for sickle cell
(28:29):
disease. And then I would justlike for people to be really
aware that individuals havesickle cell disease are just
that. They're individuals.
They're living with a chronicdisease. They're not fragile. So
you can still talk to them, hugthem, talk to them, just treat
them like normal people, insteadof, oh my God, you have this,
that or the other? No, they'rethey're individual who has a
chronic illness like anybody whowould have hypertension or
(28:51):
diabetes.
Daisha Dillon (28:54):
I'm kind of going to piggyback on what Genice
said, that we are normal peoplethat just have a chronic
disease. It's not Oh, my God. Ohmy God, you have sickle cell
disease. Um, like, No, we haveto have sickle cell disease. And
I'm living with it, just likeanybody else will. Good days are
not bad days, just like anybodyelse does. Awareness that sickle
(29:14):
cell is something that you canuse CT Paid Leave for.
Nancy Barrow (29:18):
That's a great answer. I like that. Well, thank
you so much continued goodhealth to you. Daisha Dillon,
thank you so much for sharingyour incredible story with us on
The Paid Leave Podcast. Andplease use Connecticut Paid
Leave for any part of yourjourney. And if I can help, just
you know you get in touch withme.
Daisha Dillon (29:34):
Definitely. Thank you so much.
Nancy Barrow (29:36):
And Dr Genice Nelson, thank you so much for
lending your expertise and beingsuch a compassionate health care
worker at the New England SickleCell Institute.
Genice Nelson (29:45):
Well, thank you so much. I really appreciate
that, and I appreciate the timethat you've given me to be able
to talk about this for for ourpatients, because I think the
more people who know, the bettercare, the better advocacy our
patients can have.
Nancy Barrow (29:59):
For more information or to apply for
benefits, please go toctpaidleave.org
This has been another edition ofThe Paid Leave Podcast. Please
like and subscribe, so you'll benotified about new podcasts that
become available ConnecticutPaid Leave is a public act with
a personal purpose. I'm NancyBarrow, and thanks for
(30:20):
listening.
Hello Connecticut, and welcome to The Paid Leave
Podcast. The title basicallysays it all. I'm Nancy Barrow,
and I will be delving into thisnew state program and how it can
help you and your family. Thispodcast will give you
information you should knowabout Connecticut Paid Leave and
maybe just a little bit more.
Connecticut Paid Leave bringspeace of mind to your home,
(00:22):
family and workplace. Welcome toThe Paid Leave Podcast.
September is National SickleCell Awareness Month. And sickle
cell disease affects about100,000 people in the United
States, and more than 90% arenon Hispanic, Black or African
American, and an estimated 3.3%to 9% are Hispanic or Latino.
(00:47):
And many people with sickle celldisease don't receive the
recommended health carescreenings and treatments,
mainly because of socialbarriers. And my guests will
have lots to say about sicklecell disease. Dr. Genice Nelson
is the nursing director at UConnHealth at the New England Sickle
Cell Institute, the HemophiliaTreatment Center, and Outpatient
Behavioral Health Programs. AndDaisha Dillon is a mom who was
(01:10):
diagnosed at birth with sicklecell disease and has been
suffering since she was sixmonths old. She always wanted to
be a mom and has a healthydaughter who was born without
sickle cell disease. And welcometo The Paid Leave Podcast. I'm
so happy to have both of youhere.
Genice Nelson (01:22):
Thank you for having us.
Nancy Barrow (01:24):
Let's talk about this. Dr Nelson, tell me what
sickle cell disease is.
Genice Nelson (01:29):
So sickle cell disease is an inherited genetic
disorder that affects the redblood cells, and so it's
important for people tounderstand that it's not
something that you can catch,nor is it something that you can
develop. Should you havesomething that's called sickle
cell trait. So if you are notborn with it, then you cannot
have sickle cell disease. But itis one of several different
(01:52):
genotypes of a red blood celldisorder that can cause
differences in pain, anemia, andjust really affect people's
lives in a chronic way.
Nancy Barrow (02:03):
And there's no cure for sickle cell is that
right? Just treatments?
Genice Nelson (02:06):
There is a cure for sickle cell disease. It is
not universally available, so abone marrow treatment from a
matched donor can cure sicklecell disease. It is a very long
proliferative process. Is not aneasy process, but there is
potentially a cure through thebone marrow transplant. Again,
(02:27):
it's not widely available,because you have to have an
identical match for theindividual. So ideally they have
same mother, same father, andthen you match them genetically.
It's a process that you gothrough. Then you have to treat
the individual who has sicklecell disease, because they have
(02:48):
to literally go through aprocess where you kill off their
own bone marrow, because theirbone marrow is only producing
sickled red blood cells. Andonce you do that, then you're
able to collect the donor, thebone marrow donor, from the
sibling that's going to donate,and then they're able, you know,
through medicines and differentprocesses, infuse that into the
(03:12):
patient. Once that graphs to theindividual, then they can
overcome their sickle celldisease. They'll have what's
literally known as sickle celltrait because their underlying
bone marrow disease is stillthere.
Nancy Barrow (03:26):
Wow, that is so fascinating. I didn't realize
that there was a cure for that.
And is it cost prohibitive? Isit covered under insurance?
Genice Nelson (03:34):
There are extreme costs associated with it. But
the problem, again, is findingthose matches because you made
the same mother, same father,but the differences in genetic
material is what limits peoplefrom being able to have a bone
marrow transplant. There aresometimes you're able to find an
anonymous donor that maygenetically match you, but you
(03:57):
have to have a genetic match inorder to do a bone marrow
transplant. There are somestudies where they did half
genetic matches, and it hasn'tbeen as effective. But if you're
able to be one of thoseindividuals, and there are quite
a few individuals who havesuccessfully had bone marrow
transplants, we ourselves at NewEngland Sickle Cell Institute
(04:18):
have had two patients who havesuccessfully had a bone marrow
transplant. So it is possiblefor it to happen.
Nancy Barrow (04:23):
For me, the only person I knew growing up was T
Boz, right? So I knew from TLC,she had sickle cell, and she
used to talk about how painfulit was and just how debilitating
it was, and that there was nocure. So I always felt like, oh
gosh, there's no cure for her,and I was just devastated for
her.
Genice Nelson (04:42):
She visited the state of Connecticut a couple of
years ago through a concert, andthrough my association with the
National Sickle Cell Diseaseorganization, they put me in
touch with her. She actuallyended up having a medical event,
and I stayed with her the entirenight to help her get through.
Medical event. And when I tellyou she is one of the sweetest,
(05:03):
kindest individuals you couldever possibly meet, she is
definitely that person, astaunch advocate, had an ability
to interact with her, toactually give her some teaching,
for some things that she coulddo for herself, given the
lifestyle that she has being inentertainment, and hopefully
she's taken some of those thingsto heart and has incorporated
(05:26):
them to help her have a better,less painful lifestyle as well.
Nancy Barrow (05:30):
Wow. How fascinating is that? What do you
do at the New England SickleCell Institute at UConn Health?
What do you do there as theNursing Director?
Genice Nelson (05:39):
So as the nursing director, I oversee our clinical
and programmatic operations.
What it means is that I'm hereto help ensure that our patients
are getting high quality care,that they're engaged in care,
that we're doing the things thatwe should do for every
individual with sickle celldisease. So an individual with
sickle cell disease, there arecertain screening examinations
(05:59):
that they should have so that wecan check their heart, their
lungs, their eyes, depending onthe different kind of sickle
cell disease that they have,we're plugging them in into
primary care, because as peoplelive to be older, all of the
things that plague the generalpatient population can also
plague individuals who havesickle cell disease. So at a
certain point, they have to bescreened for breast cancer, they
(06:22):
need to be having prostateexams, they need to have
colonoscopies, all of the thingsthat the general patient
population have. And then wereally focus on trying to manage
their individual sickle celldisease and the different things
that they have. So you haveindividuals who may have a
history of stroke, and sothere's an indication for a
person who has had a stroke,which means that they need to be
(06:45):
on chronic blood transfusions.
So we manage those chronic bloodtransfusions. We may have
somebody who's pregnant, andDaisha can share her story with
you how we help to manage herpregnancy, but we just try to
help ensure that our patientsget, high quality care, that we
help them to have as lesssymptoms as possible and just
(07:08):
really be engaged in theirfamilies and their home lives.
Nancy Barrow (07:11):
Yeah, and how do you diagnose it? Is it a simple
blood test?
Genice Nelson (07:15):
So it is a simple blood test an individual who has
sickle cell disease should havewhat's called a hemoglobin
electrophoresis test. Yeah, it'sa mouthful. It's a mouthful.
What it does is it identifiesthe different hemoglobins that
individuals have. So anindividual who does not have
sickle cell disease hashemoglobin AA, because you
(07:36):
inherit one gene from your mom,one gene from your dad. So an
individual who has sickle celldisease, they have two different
types of or they may have thesame type, SS or SC. There's a
bunch of different types ofsickle cell disease, but it
teases out which kind ofhemoglobin they have. And so
that's how you determine ifsomeone has sickle cell disease
(07:58):
or sickle cell trait. And oncethat individual is identified,
then through the state ofConnecticut, we notify through
newborn screening process, theparents that their child has
sickle cell disease because theyneed to be engaged in care
sooner rather than later.
Nancy Barrow (08:16):
And do we know why that black and brown people are
affected so much more with thisdisease.
Genice Nelson (08:22):
It depends on where you are globally as to
who's affected by sickle celldisease. Because sickle cell
disease, I know people thinkthat is a black and brown
disease, but it affectseveryone. So we have in our own
program people who are Caucasianwho have sickle cell disease as
well. So I need people tounderstand that. So, depending
on where you are, globally,depends on what sickle cell
(08:44):
disease looks like. Think aboutsickle cell disease as a natural
genetic mutation that occurredas protection against malaria.
And so those malaria belts, youknow, Africa, Turkey, India,
those are the countries thatwere malaria was prevalent, as
sickle cell trait is protectivefrom people dying from malaria,
(09:06):
sickle cell disease itself isnot and so that's how sickle
cell disease was propagated, assickle cell trait was protective
from malaria.
Nancy Barrow (09:16):
Let me ask about the treatments, because I think
that that that's a loadedquestion, right? Because I think
depending on what you can do,there are different treatments,
right? Like, is it normal to geta blood transfusion and IV pain
medications, or is gene therapycoming about and stem cell
therapies?
Genice Nelson (09:34):
So let's take it one step at a time, so an
individual who has sickle celldisease may or may not need a
blood transfusion. It depends onwhat their symptoms in or
medical problems are. So if youhave a person who, like I said,
who has had a stroke before, theprotocol or treatment for that
individual is to prevent themfrom having another stroke. So
(09:57):
how do you prevent them fromhaving another stroke? You. Want
to suppress as much as possiblethe ability of their blood to
sickle so you decrease theirsickle blood by giving them non
sickled blood, and so that willhopefully prevent them from
having another stroke. So for anindividual who may have a
medical emergency called acutechest syndrome, where is like
(10:21):
having pneumonia, except it'ssickled cells that are clogging
their lungs there that's amedical emergency, which may
require a full body bloodtransfusion, and so, depending
on what issues an individual hasmay or may not require them to
need blood for a woman who'spregnant, who sometimes their
(10:43):
baby may not be developingenough, because, again, that
individual has sickled blood andnon sickle blood is more
beneficial because it can carrymore oxygen and has more
hemoglobin. You may need to givethem blood transfusions to
support their pregnancy, theother medications that are
available. So for instance,Cascavey and Lefjevy those are
(11:06):
the two stem cell or newertherapies that are available. So
they are very, very expensive,on average, about three to $5
million but if you think aboutwhat this can do, this, these
treatments take individual stemcells and they alter their stem
cells so that they no longerhave sickle cell disease, and
(11:28):
then they re-infuse it into thepatient. Now I know I'm making
it sound very, very simple, butthat patient has to go through a
deconditioning process, because,again, their body is making
sickle cells, so you have tokill off their body's ability to
make those sickle cells, whichmeans they may have a very
prolonged hospitalization, theymay get very weak, they could
(11:49):
possibly get sick. You have tokeep them in a protected
environment, because they'regoing through this conditioning
with some chemotherapeuticmedications to prepare their
body for these transformed cellsthat will now hopefully take
place and replace their sickledcells. So not necessarily easy
(12:10):
decisions for individuals tomake, but they can be life
changing decisions onceindividuals have experienced
this, and depending on yourproviders, we don't offer that
right now, yeah, but we areprocess of partnering with our
bone marrow treatment programthat is in the process for
accreditation. So we're lookingto next year, be able to
(12:31):
possibly start offering thesetherapeutics to our patients as
well, which we're extremelyexcited about, because these are
life changing events and to beable to affect someone's disease
to the point where they're nolonger hospitalized, they're no
longer in pain, they no longerneed blood transfusions. It's an
amazing opportunity for them tohave a different scope and
(12:56):
perspective on their life,because now they can go and live
as normally as you or I, withoutthe complications that they're
currently facing.
Nancy Barrow (13:05):
Daisha, why don't you tell me about your journey
with sickle cell disease?
Daisha Dillon (13:10):
Well, it's been an up and down journey, as you
know, I was diagnosed at sixmonths, so that's when I had my
first crisis, as my mom says,and I've just been living with
it till 35 which I am now, gooddays, bad days and in between.
Nancy Barrow (13:31):
Yeah. And so like a typical day for you, do you
have to get hospitalized? Do youget blood transfusions?
Daisha Dillon (13:37):
All of the above?
So it was a point where I wasgetting blood transfusions once
a month. I no longer get those.
Thank you, Jesus. When I do geta monthly medication, I believe
the name is Adapvio, thatdecreases my crises, and I am on
my chronic pain medication tohelp me, well, I'll be able to
(13:59):
live as normal as possible. Beable to go to go to work, go on
vacation.
Nancy Barrow (14:04):
And that's amazing, right? So if you have
this medication and you don'tneed blood transfusions, that's
life altering. And so doctor,these are all things, yeah,
these are all things that you asa team work on with Daisha.
Genice Nelson (14:20):
Absolutely! So the medication that dish is
talking about, Adaptvio thegeneric name is Chrisamizalab.
Is a medication that is infused,meaning that it is given through
an IV once a month. Thismedication works kind of like
and I when I explained it to apatient, I explained it to think
of your body as being a car, andyou need oil to protect your
(14:42):
engine. So in in this personwho's now the car, the oil, or
the Adaptvio, encompasses thered blood cells so that they
don't stick together. They don'tstick together. Now they're able
to flow freely, and that helpsto prevent the pain from
happening. So the medication, byselection, or P selectin
(15:05):
specific prevents the cells fromsticking together and sticking
to the tissue lining, whichprevents the cells from clumping
together and causing pain,causing pain. So that's why I
use that a car and oil, yeah,because that's really a good
visual for how it kind of works,
Daisha Dillon (15:24):
And it works!
Nancy Barrow (15:24):
And it works, and so are you. Are you? Is your
pain a lot less than it used tobe Daisha?
Daisha Dillon (15:31):
100% I have a job. It was a point where I
didn't have a job before. It wasa point where I was going to the
sickle cell clinic maybe twice,three times a week to get a new
pain medication. I probably gothere once a month, if that, for
pain medication.
Nancy Barrow (15:47):
That's like altering and being able to have
a job is is crucial, right,especially since you're a mom.
So tell me about that journey ofbecoming a mom, because it's
complicated with sickle cell.
Daisha Dillon (15:59):
Definitely, just because when you have sickle
cell, one of the things thatthey tell you is that, not that
you can't have kids, but thatwould be very, very difficult
for you to have kids, that itwas something that you can die
from, something that youshouldn't do. It's something
that would be life altering. Soit was one of those things that
(16:20):
when I got pregnant, I was like,Oh, what do I do now? And I was
very, very nervous, and it wasso when I talked to Janice, and
I think that what she told mewas, you're not the first person
to have sickle cell have a baby,and you're not going to be the
last. And that just comfortedme. And she created a whole
treatment plan so that I couldhave a healthy baby girl, and I
(16:42):
did!
Nancy Barrow (16:43):
And that's amazing. So did you have to go
off medication when you werepregnant? And did that change
the pain that you were in, ordid it change anything?
Daisha Dillon (16:52):
Yes, and no, I think we added medication and I
didn't have to go off on my painmedication, because they were
able to find a way for me totake it so that my daughter
didn't get addicted tomedication. If that makes sense,
gotcha. Gotcha as a narcotic.
And when she was born, theylooked after her to make sure
she didn't have any withdrawalsymptoms, and she didn't.
Nancy Barrow (17:15):
So that's is that a concern for you doctor, when
there's a sickle cell patientthat is pregnant that she may
pass that gene on to the baby.
Genice Nelson (17:23):
If you have an individual who has sickle cell
disease, as a mom, she isdefinitely going to pass on one
half of her gene set. So if shehas SS disease, she can only
pass on an S if she has scdisease, then she could pass on
an S or a C. So it depends onwhat kind of sickle cell disease
the individual has, but they'regoing to pass on what it is that
(17:44):
they have genetically, notnecessarily concerned about if
mom has sickle cell disease.
What we what we tend to focuson, is testing the dad. What
does dad have? So when we notsure what dad has, we say, hey,
father of the baby, come on in.
Let's get some blood. Let's seewhat you got going on so we can
make a determination of whetheror not the baby may possibly
(18:07):
have sickle cell disease,because a baby has sickle cell
trait that, in itself, doesn'tnecessarily cause health issues,
but it also gives mom a peace ofmind that she doesn't have to
worry about baby having diseaseversus dad having sickle cell
trait and mom having sickle celldisease, then, you know, the
likelihood is very high thatthey could have a baby with
(18:28):
disease, so we just focus ontesting dad so we can relieve
mom's fears.
Nancy Barrow (18:33):
What about clinical trials? Do you offer
those for sickle cell disease atUConn Health?
Genice Nelson (18:40):
We are research Central!
Nancy Barrow (18:43):
I know you are!
Genice Nelson (18:43):
When it comes to clinical trials. We, we
currently have four differentclinical trials that are open
right now. We, we prideourselves in trying to ensure
that we bring to our patientseverything that we can bring to
our patients, and in order forthem to have access to newer
(19:04):
treatments, better treatments,we have to perform clinical
trials. And in order for thoseclinical trials to be
successful, you have to havepatients who have sickle cell
disease. So we encourage ourpatients to participate.
Typically, they're knocking downthe doors. Hey, do you have a
child that I can participate in,which is fantastic, because the
only way that we're going toimprove their life the care that
(19:27):
they're receiving is throughthese trial and error processes.
Again, we're looking to partnerwith our bone marrow treatment
program so that we can bring thestem cell therapies to our
patients, we're always lookingfor clinical trials that are
going to benefit our patient insome way, shape, form or
(19:47):
fashion, whether it impactstheir hemoglobin, if it impacts
their pain, if it impacts theirdisease in any way, if it's
something that we feel isbeneficial to our patients, our
medical director. Dr berendaMaryam is a very serious
advocate and component of makingsure that we are viably in the
(20:10):
research space on a daily basis,and we have a whole research
team of individuals that arededicated to our clinic
specifically for research.
Nancy Barrow (20:21):
Yeah, it's amazing. Daisha, you were
talking about having a job, andhave you used Connecticut Paid
Leave?
Daisha Dillon (20:30):
Yes, I actually used Connecticut paid leave when
I had my daughter. Because whenI had my daughter, I think I had
her at 36 Well, I know I had herat 36 weeks, and I wasn't ready
to leave work. I wasn't preparedor anything. But Connecticut
paid me was actually prettyeasy. All I did was contact my
(20:51):
HR. They gave me the paperwork,and then I brought it to Teresa,
which is the sickle cell socialworker, and she, like,
literally, filled out the paperfor me, walked me through it,
and it was done. Oh, it's sogood. enough to worry about,
like, oh my god, I'm gonna getpaid, and not to worry about,
like, filling out any morepaperwork. Literally, I went
(21:12):
into the hospital and had mybaby girl.
Genice Nelson (21:15):
Our social worker does yeoman's work when it comes
to taking, yes, patients. She ison top of every possible
resource possible. And just likeDaisha said, she doesn't just
give them the set of paperworkand say, Here you go. Go fill it
out, she is hand in hand withthem to make sure that the
paperwork is filled outcorrectly, that it is filed and
(21:35):
that it goes through tofruition, that she knows that
it's been approved and what theyhave access to. So I give kudos
to Teresa. Works every singleday, and it is absolute pleasure
to work with social workers likeher and Emily Baker, who are so
dedicated to our patientpopulations.
Nancy Barrow (21:52):
Well, those women, they get gold stars from
Connecticut Paid Leave for beingable to help people fill out
that paperwork when they can't,you know, when it's when it's
you know. And the stress too, isis something that can, that
exacerbate the symptoms ofsickle cell?
Genice Nelson (22:06):
Absolutely, it can. Yeah, emotional stressors,
physical stressors, thetemperature, so when it gets
very hot, when it gets verycold, things that you or I don't
take a take into account and howit physically bothers us, can
trigger an individual who hassickle cell disease to have a
painful crisis and end up in theemergency department, or even
(22:28):
hospitalized.
Nancy Barrow (22:29):
Oh my goodness, yeah. Has that happened to you
Daisha?
Daisha Dillon (22:32):
Multiple times.
Multiple times!.
Nancy Barrow (22:35):
Is it the stress that sets you off, or is it the
temperature that's reallyinteresting.
Daisha Dillon (22:40):
It could be anything. I'm going to Disney
World on Saturday, and I'mnervous.
Nancy Barrow (22:44):
Did you ever think that you'd be able to go to
Disney World and have yourdaughter with you?
Daisha Dillon (22:50):
Have my daughter with me, no! Because, like I
said, they for so many years, itwas like, Oh no, you shouldn't
have a child. So I just, youknow, okay, okay, it wasn't one
of the things that, like Iwanted it, but it wasn't one of
those things. I was like, okay,you know, I'm trying to have a
child, just because all of thedoctors that told me that I
(23:10):
shouldn't.
Nancy Barrow (23:11):
And so now this is going to be a different
experience for you.
Daisha Dillon (23:14):
Definitely, and then a lot better predicament,
and a lot better space of myhealth. That's definitely so
definitely, I can say that.
Nancy Barrow (23:23):
And did you ever go to a support group? Or do you
recommend that?
Daisha Dillon (23:27):
Yes, I do. I definitely recommend support
groups like having friends thathave sickle cell disease,
because there's some things thator somebody's that you'd like.
Okay, what is this? I've neverfelt this before, and it just
feels good knowing somebodyOkay, no, I've had that before.
That is sickle cell. You can goto the clinic, tell them about
it like it just reassures you.
Nancy Barrow (23:47):
Yeah, there's strength in numbers, right? Like
so and and there's comfort inknowing that you're not alone in
this.
Daisha Dillon (23:53):
Definitely, it's always good to have support too,
because there's some days whereyou just feel defeated. You just
feel defeated, and it's up tothat person to say, Nope, you
got this the causes, it will goaway. You know, it's not gonna
be here forever. You know, holdyour hand. Get you through it.
It's times where I don't want togo to the hospital, and because
(24:15):
I'm I'm just tired of going, andI know that I need to go. And
then I'll call a friend andlike, nope, come on. We're
going, we're going.
Nancy Barrow (24:23):
Yeah, it's a lot when you get this diagnosis.
What about mental health Genice,what do you talk to people
about? Because living withchronic pain is exhausting and
it's awful, and going tohospitals is is tiring, and you
don't want that. How importantis it for patients and family
members even to get mentalhealth support?
Genice Nelson (24:42):
Part of our process for when our patients
come in is to ask thosequestions, are you feeling
anxious? Are you feelingnervous? Do you feel depressed?
Are you having sleepdisturbance? Do you have
suicidal ideation? And it isokay to acknowledge that you may
have to some degree any of thisor none of this, our social
(25:03):
worker does some psychotherapywith our patients. We do refer
to our outpatient behavioralhealth psychiatric programs as
well, but we do tell ourpatients there is help should
you need it. And we try toscreen for that, because we know
living with a chronic disease,for one thing is not easy at
all. Living with acute, chronicpain is even more difficult on
(25:28):
top of it, then when you have adisease where you know people
like days of her she shouldn'thave a baby, or she could die at
a young age, those things startto burden individuals, and as
they get older, it can make themmore anxious or nervous about
what their life trajectory is.
And so we try to intervene wherewe can and say, Hey, let's
(25:48):
partner with this mental healthgroup or that mental health
group to see where we can we cantalk through some of these
things. Sometimes people needsome medications because anxiety
and depression is real, and weas a as a society, have really
acknowledged that given covid.
But we still need to make surethat services are available to
(26:11):
people, and as peopleacknowledge that there are more
and more psychiatric issues thatare being uncovered, there are
less and less servicesavailable. So we really have to
be diligent to make sure that weare really serving the whole
individual, not just their pain,but their mental health as well.
Nancy Barrow (26:28):
I think that's so important. And Connecticut Paid
Leave also covers mental health.
We tell people to always takethat FMLA to get their job back.
So take it together. FMLA andConnecticut Paid Leave because
we do the income replacementportion. So take them together.
It's really important that youknow this, since you're working
and you're paying into thisprogram, Daisha, that you can
take this program for manyreasons, and for long periods of
(26:52):
time if you need it shorterperiods of time, intermittently
or from a reduced schedule fromwork. There's a lot of
flexibility with ConnecticutPaid Leave, so make sure that
you talk to that social workerand and you find out if you need
anything from us.
Daisha Dillon (27:08):
I'll have to look into that. Yeah, intermittent
leave.
Nancy Barrow (27:11):
How important are programs like Connecticut Paid
Leave to patients and theircaregivers?
Genice Nelson (27:16):
For many of them, it can be the mind relief that
they need to know that ifthere's a medical emergency or
something that takes them out ofwork for an extended period of
time, or affects their income inany way, shape, form or fashion,
they have something to back themup. And we do have the
information for Connecticut PaidLeave in English and in Spanish
hanging in our waiting room sothat is visible for all of the
(27:39):
patients every single time theywalk in the doors.
Nancy Barrow (27:41):
What are your hopes for national sickle cell
Awareness Month?
Genice Nelson (27:45):
Well, I have two hopes. One of the hopes that I
have is that individuals whohave sickle cell disease, as
I've said, need blood. So one ofthe hopes that I have is as and
one of the issues thatindividuals who have sickle cell
disease who need blood is thatthe black community does not
donate, so the blood pool ismostly Caucasian, and so there
(28:09):
are some very tiny geneticdifferences in the blood that
causes individuals who havesickle cell disease over time to
develop antigens or allergies toblood. So if I could do
anything, I would encourage theblack community to come out and
donate blood and earmark itspecifically for sickle cell
(28:29):
disease. And then I would justlike for people to be really
aware that individuals havesickle cell disease are just
that. They're individuals.
They're living with a chronicdisease. They're not fragile. So
you can still talk to them, hugthem, talk to them, just treat
them like normal people, insteadof, oh my God, you have this,
that or the other? No, they'rethey're individual who has a
chronic illness like anybody whowould have hypertension or
(28:51):
diabetes.
Daisha Dillon (28:54):
I'm kind of going to piggyback on what Genice
said, that we are normal peoplethat just have a chronic
disease. It's not Oh, my God. Ohmy God, you have sickle cell
disease. Um, like, No, we haveto have sickle cell disease. And
I'm living with it, just likeanybody else will. Good days are
not bad days, just like anybodyelse does. Awareness that sickle
(29:14):
cell is something that you canuse CT Paid Leave for.
Nancy Barrow (29:18):
That's a great answer. I like that. Well, thank
you so much continued goodhealth to you. Daisha Dillon,
thank you so much for sharingyour incredible story with us on
The Paid Leave Podcast. Andplease use Connecticut Paid
Leave for any part of yourjourney. And if I can help, just
you know you get in touch withme.
Daisha Dillon (29:34):
Definitely. Thank you so much.
Nancy Barrow (29:36):
And Dr Genice Nelson, thank you so much for
lending your expertise and beingsuch a compassionate health care
worker at the New England SickleCell Institute.
Genice Nelson (29:45):
Well, thank you so much. I really appreciate
that, and I appreciate the timethat you've given me to be able
to talk about this for for ourpatients, because I think the
more people who know, the bettercare, the better advocacy our
patients can have.
Nancy Barrow (29:59):
For more information or to apply for
benefits, please go toctpaidleave.org
This has been another edition ofThe Paid Leave Podcast. Please
like and subscribe, so you'll benotified about new podcasts that
become available ConnecticutPaid Leave is a public act with
a personal purpose. I'm NancyBarrow, and thanks for
(30:20):
listening.
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