This video is a presentation of the National
Heart, Lung, and Blood Institute. Our Story: Living with Sickle Cell Disease
Bridget H.: What game am I winning at? Nicholas H.: Operation.
Bridget: When I tell someone my son has sickle cell, the first thing they say is — what
nationality, what are you? I believe some people think that sickle cell is only an African
American disease. I would like people to be aware that sickle cell is a blood disorder
that can happen to all different races. Jay: Two thousand!
Bridget: When Nicholas was diagnosed with sickle cell at birth, I didn’t believe them.
Nicholas’ father has sickle cell trait and I have Thalassemia minor. No one ever explained
to be careful if I have children. Nicholas: As a kid growing up, you don’t really
know what’s going on. Oh, I guess I have sickle cell.
Bridget: In the early years, Nicholas’ hands and feet used to swell– hand and foot syndrome–
He was an infant. We would take him to the ER.
At age five he had his gallbladder removed and his spleen removed. He’s had blood transfusions
and a blood exchange. With sickle cell — in order to go to the
ER — it has to be a pain crisis or a fever. And that would happen often.
Back in the day when Nicholas was — from birth till around 6 — they knew him by his
first name — the employees at the hospital– because we were there all the time.
Nicholas: The pain — it feels like somebody squeezing you, thumping– ba-boom, ba-boom.
Bridget: Sometimes it’s so severe that the medications don’t help. And he is yelling
at me, “Right now! Take me right now.” And we’ll go to the hospital.
Nicholas: It’s like a lifestyle. So you kind of get used to it. I’ll go in, they’ll ask
what’s wrong and then I’ll get admitted and that’s it, I’ll stay for however long I need
to until it goes away. Bridget: Since Nicholas has started taking
hydroxyurea, he’s been able to be more active. Nicholas: Hydroxyurea changed my life. I can
stay home for months at a time now. I’d be in the hospital all the time when I was a
kid. So now I’m being able to stay at home and have like a regular schedule with sports
and you know school and friends. Bridget: Pretty much everything is under control
because of hydroxyurea and penicillin. Doctor: How are you guys doing?
Nicholas: I think it’s very important to have a good relationship with your doctor ’cause
if it’s just like a hi-bye type of thing you’ll only be getting medicine you know and that’s
it. But if it’s a good relationship I think you’ll understand more about it. You know
and they’ll be there for you instead of just like a straight business relationship.
Doctor: Every year until you are an adult we’ll want to review your TCD, which is a
transcranial doppler study. Bridget: The hospital that we go to in Chicago
has its own sickle cell unit. The doctors at the hospital taught me everything I know
about sickle cell. They explained everything very well.
When Nicholas was younger, only the hematologists understood the disease. The pediatricians
didn’t. But now that Nicholas is older, we found a
pediatrician near our home who knows what to do, what kind of sickle cell questions
to ask. What kind of advice to give us. And it’s very important to have a hematologist
and a pediatrician working together. It’s like tag team. We’ve got double support.
In 2010 Nicholas participated in a study um regarding lung function.
Nicholas: Participating in the studies — I think it helps them, helps the doctors figure
out more about the disease and you know come out with more medicine and just help everybody
who has it. Bridget: I feel people should participate
in the study if they feel the same way we do. We want them to know as much as they can
about sickle cell. I wish they would come up with an instant
cure, of course. You know I wish there was something that could be given and it would
be gone. But you know he’s strong. He deals with it.
Nicholas: I have to pull through it you know. It’s something that’s there. You really can’t
do anything about it. So you just gotta get through it. Stay tough.
Bridget: I wish he didn’t have it. Nicholas: I think about that all the time.
If I didn’t have sickle cell. Like if I’m in the hospital bed in the middle of a crisis,
I’ll think about it and be like I wouldn’t be here right now. Everything would be fine.
Bridget: He’s respectful and he’s fun and he’s very popular amongst his friends. And
he’s a good brother and a good son. Nicholas: Managing my sickle cell without
my family would’ve been hard ’cause they’re always there for me. So I can’t really imagine
what it would be like you know without having their support. They mean a lot. I love ’em.
Bridget: I just want him to be successful and live a normal life. I want him to get
married and have children. I hope sickle cell doesn’t hinder him from having a normal life
like everybody else. Nicholas: I don’t think sickle cell will stop
me because it hasn’t yet. I won’t let it.