Managing Sickle Cell Disease as a Teenager

Managing Sickle Cell Disease as a Teenager


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.

32 Replies to “Managing Sickle Cell Disease as a Teenager”

  1. I have sickle cell disease and I am 34. I am a singer/songwriter and my next album is gonna alll about living with my disease and how God has been with me! I'm rooting for you Nic!
    I'm Alain Emmanuel.
    Get in touch with me on facebook and I'll make sure we keep in touch! Keep your head up little bro!

  2. It feels like he's talking about me… it's very similar.. the pain is like something making pressure inside whenever my heart beats and it's very painful.. and i've got used to going to hospital and getting admitted, I'm in danger of removing my Gallbladder but thank God i haven't removed it yet or my spleen..

  3. It feels like he's talking about me… it's very similar.. the pain is like something making pressure inside whenever my heart beats and it's very painful.. and i've got used to going to hospital and getting admitted, I'm in danger of removing my Gallbladder but thank God i haven't removed it yet or my spleen.. and i have the pain now in my leg seriously x_x

  4. Thank you for this because it's TRUE! By the way… what ignorant person would give this video a thumbs down??? I really don't understand this world sometimes.

  5. I suffer with this disease but I'm determined to manage my disease instead of letting my disease manage my life… Check out my channel, I give the world awareness by letting them follow me thru my battles.. We must support each other

  6. @onetouchmusic it's great that your doing something many of us never get to do, I was fortunate enough to record an album and travel as an opening act… Keep it up , can't wait to hear it

  7. @ysmaboy During hemolysis, an increased number of red blood cells breaks up, releasing hemoglobin. Hemoglobin is then broken down, with the "heme" part being turned into bilirubin, a yellow pigment. This is what makes the whites of the eyes turn yellow. Having your eyes look yellow after hemolysis is very common and is not considered a dangerous condition.

    (Please note, the NHLBI cannot counsel on specific medical problems. Consult your physician.)

    Learn more at the NHLBI website.

  8. All of these success stories of SCD is nice, but my story is much different. Im 30yrs old and I have been in and out of the hospital every 3months for the past 15yrs with sever pain crises from my disease (HbSS). I've had a stroke, gull bladder removed, hip replacement,avascular necrosis of both hips, shoulders, and lower back, blood transfusions, blood exchanges, plasma transfusions, and was once told by a Dr. That I won't live to see 36yrs old. I'm in pain everyday and my disease caused my to

  9. Thank you for your comment. We are sorry to hear about your situation. As a federal research institute, the NHLBI cannot counsel individuals on specific medical problems. Advice on treatment or care should be obtained through consultation with๏ปฟ your physician or other health professional who has examined you and is familiar with your medical history.

  10. I share the same story ive been dealing with sickle cell my whole life ive been in and out of the hospital to so i feel what you go through.

  11. I to have sickle cell ive been dealing with sickle cell since i was a baby so i know how it feels to have a crisis ive been in and out the hospital my whole life so i know what ever sickle cell person or persons go through.

  12. Hi Hitta, your story is not uncommon. We (people with sickle cell) have to overcome many things, but there is hope. It helps to unite with others for support & encouragement. There are a few places to go on-line for patient support. Check out my blog sicklecell-ourvoice.blogspot.com & sikcell.com. We are patients supporting patients because we feel your pain too.

  13. I am 41 and I always think about the what if. I am still fighting. I also have accomplishments that I am very proud of. I was only able to finish Jr. College my mom was so proud you would have thought I was getting a PhD. I worked and loved my profession, I hid my Sickle Cell for a lot of years. Now I am open and have stepped away from fear. I have had a lot of pain but also a lot of Joy. Joy and laughter takes away the pain.

  14. This was very touching, I have the trait and I know it's nothing in comparison to this but I watch these videos because of the possibility of passing on the trait or the actual disease to my unborn children. I guess i'm sort of preparing myself for what could happen. I don't want to have to scan my partners for the trait or other issues that could cause our children to have SCD.

  15. hey how are you please sub to my channel I would love to talk to other people that live with illness like myself

  16. Don't be depressed, because you only found out late, but not too late. There is much to be thankful about.

  17. dear Keith, I understand you frustration. I am a 43 year old woman and have been in pain for the past 16 years constantly. I have had shoulder replacement, hip avascular, my gal bladder removed and been in coma for several months. I dread hospital visits as they make no sense I find. I do wish you the best and will also pray for you.

  18. Thank you for sharing. As a mom of 2 boys of mixed races with the trait and who both have had moderate issues, this helped. We watched my husband, their father struggle with the disease and I am researching how to manage our children who have the trait. God bless your son and your family.

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