Sickle Cell Patients Finally Have A Clinic In South LA | HuffPost Reports


– My parents are carriers
of the sickle cell trait, and so I’ve had it all my life. It really doesn’t feel like
nothing on a typical day, but when you do experience
sickle cell crisis, it’s very painful, your
body aches, you get tired, you just aren’t able to cope. I’ve been saying this since I was a kid, but whenever someone asks me
what does the pain feel like, I say that it feels like
someone is stabbing you and twisting the knife. It’s very painful. – People are dying, that’s
why we set up this clinic. Patients had no access to
care and were just using the emergency room. If this clinic weren’t here,
the patients would just be doing what they did before,
which was patching together care and not having an
outpatient provider who knew what they were doing and
could take care of them. – Sickle cell is a hereditary
disease, it is called a recessive disease, meaning
that you need to have two copies of the gene, one
that comes from the mother and one that comes from
the father in order to have the disease state itself. – Well it’s a multi-system disease, and there’s widespread organ damage. You name a system there’s some damage, it’s not just pain. (music) – Sickle cell is commonly found in those with African decent, and
those of South American, Central American decent,
and so we have both of those patient populations
living right here in South LA. – There are probably 90 – 100,000 patients in the United States
and about seven thousand in the state of California. – As a kid, ooh, it was tough. I wasn’t always able to to do everything my friends could do, I
would miss days of school, kids would ask, “Where were you? “You were gone weeks.” When I was younger, I
would have maybe a crisis at least three to four times a month. My son was born premature,
and it was due to me having a sickle cell crisis. It was tough in the beginning when he was a little younger because
he wouldn’t understand Mommy’s sick and she’s in the hospital. And he was like, “Mommy, why
are you in the hospital?” But now he understands. I may run into a issue
where I’m feeling pain and not so good and so
I’ll have to find someone to watch my son if I need
to go to the hospital or anything like that. Some jobs just won’t
understand that you can get a crisis anytime, you
can get sick anytime, and it will have you
taking days off of work. Any type of stress can trigger it, any type of worrying,
so I just try to remain in a peaceful state of
mind and just kind of go with the flow of things. – Sickle cell used to
be a pediatric disease because people didn’t live
long enough to have it as an adult disease, and so
finding pediatric hematologists who manage sickle cell
is very easy and common, but finding adult hematologists
who’ve managed sickle cell is actually a lot harder. – It’s very close to the… It requires a team approach
’cause it’s a chronic illness. It has not only medical clinical issues but also psychosocial
issues, economic issues, socioeconomic issues. We have to do comprehensive care, every organ system, we check all that, but unless you do it in a clinic like this with people who know about sickle cell and are familiar and comfortable and know the issues, patients
just don’t get good care. – Why don’t you…
– You have big day tomorrow? – I have to go down to Orange County and see patients.
– Oh. We all know that when you
have the best insurance, you have access to those
good doctors and clinics and physicians, and so I
haven’t always had access to good caring doctors and
having the right physician for you and that knows
you and your condition, it’s been challenging
finding the right clinics and finding the right doctors. – We try and get everybody on hydroxyurea, which prolongs life by nine or ten years, raises the hemoglobin,
prevents organ damage. We try and avoid narcotics,
but some patients, I mean they have horrible
pain, so we do need, they do need narcotics. They try and manage at home. Getting proper rest,
not stressing yourself, not going up into high
altitude, not getting cold, that kind of stuff,
just stress management, but sometimes you just can’t prevent it. The primary team which is myself, the nurse practitioner,
and the social worker, plus Anthony, the community health worker all sit together and talk. It takes a lot longer, we
can’t see as many patients, but the patients really appreciate it because they get everything they need. It’s not like going to a private practice where you would see
somebody for ten minutes and you don’t get a lot of intense care. – I’m originally from Maryland. I moved to LA because overall
I felt that it was better for my health because this
is warmer weather here, the environment, the food, the community. I googled sickle cell clinics in the Los Angeles County area, and not many came up,
so when they popped up, I was like, oh perfect,
let me check this out. – And then…
– I did the echo. They make me really feel at home, like it’s my own personal doctor that I can jut call anytime. They’re very open, and
that’s what I like about it. – I think people are
actually feeling better, they’re coming in,
they’re getting good care, they’re staying out of the hospital, and they feel like they’re
someplace that cares about them. I hope this clinic continues
to grow and that we can see more patients, and my biggest
concern is that we don’t have anybody else like myself
who can follow or come in to this clinic and be
the next hematologist. It’s a problem all over the country. It’s very hard to find
somebody who’s interested in adult sickle cell care
and who wants to do this. – I feel like I am really healthy. I feel like California
has been a great move and the best decision I’ve
made, especially for my health and my son and my family. On a day to day basis, I’m
just really being a mom, taking my son to school,
making sure I’m in good shape, making sure I’m healthy, and
just tryin’ to enjoy life. (music)

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