Living With and Managing Sickle Cell Disease



I've lived with stickers on my whole life I've never known anything else I have sickle cell disease I have SS that's the most severe form of sickle cell disease the doctors told my parents that I probably wouldn't live to see my 18th birthday sickle cell was like a death sentence but now it's it's totally the opposite I mean people can live effective prosperous lives healthy lives with sickle cell disease so I think that we've come a long way since I was a child my parents have always told me you can be whatever you want to be you can do whatever you want to do but after I had my daughter I was really really sick I had a lot of hospital admissions more than normal more than I've ever had and I would get really really sick and generally your picture had a crisis is the hallmark of sickle cell disease and the crisis is just pain and any location of your body you can have it wherever blood flows if I had to describe it it would be like repeatedly being stabbed with a butcher knife in the same spot non-stop that's what it feels like so growing up from the time I was born up until maybe I was eight or nine I took penicillin every day of my life and the purpose of that I think is to prevent any kind of affection just in case my brother who's had many more complications than I had with sickle cell he tried hard drugs every room he was about 13 or 14 and every side effect that the medicine could offer he had so I was afraid to take it but I thought it wouldn't hurt to try it so I started taking hydroxyurea in May 2009 and it has really really changed my life I haven't had an emission in 13 months and it's my numbers my blood numbers are wonderful my doctor is totally pleased with it I haven't had any negative side effect from the medicine it's really wonderful it's been good to me it's so much more important for me to stay healthy now it's because of my baby girl the day she was born they tested her for the disease but I knew that she didn't have the disease because her dad doesn't have the trait or the disease but she does have the trait it's really important for me to stay healthy for her but also it's important because I love what I do I love my job I love life and I don't it's it's not fun being sick so I do everything in my power to stay healthy take my medicines every day without fail I don't smoke never try to smoke never will smoke but I do eat fairly healthy I think the main thing I do is my fluid intake that has a lot to do with how well people do with super so disease life right now is great I'm healthy I'm a mom to a beautiful little girl who I love so much I just bought a house so I'm really excited about that and I'm in school I'm getting my masters in Healthcare Administration it feels great to know that yes when my parents told me I can do whatever I wanted to do and be whoever I wanted to be that I'm actually doing it now having a good attitude affects any area of your life whether it's health related or job-related or any area of your life so I always try my best to have a good outlook on life I have sickle cell but sickle cell doesn't have me you

17 comments

  1. The brave heart is the first remedy of this like dreaded disease.The video remembering us this truth once again. Thanks for this great effort!

  2. Thanks very much for your comments and for sharing your story. Please note that as a federal research institute, the NHLBI cannot provide referrals or recommendations to doctors nor counsel individuals on specific medical problems. Advice on treatment or care should be obtained through consultation with your physician.

  3. Wow. I'm researching this for biology and this is truly amazing. I had no idea how severe this was with the crisis and treatment on how it changes your whole life.

  4. in 21 with sickle cell beta thal & in expecting my first child in happy to i don't have them pains like i use to

  5. 45 year old sickle cell survivor!!!!! We are a Strong, Blessed, Group of People. Everyday, I wake up and thank my Heavenly Father, for one More Day!!!! Be Encouraged!!!

  6. I understand firsthand what Sickle Cell pain can feel like. I'm 20 and I have SS disease as well. Sometimes I feel like my mom doesn't even understand, let alone the doctors. Bottom line is that you can't comment on somebody's struggle unless you felt their pain. I thank you for your courage to raise awareness for Sickle Cell Disease.

  7. It really hurts when people think your faking. Or they think that you are not as sick as you say you are. Sometimes the emotional pain can hurt worse that the physical.

  8. I feel you. Right now my shoulders are literally tearing me apart. My left 1 is the worse of the 2. I've a had a crisis in it 1 since 1/29. Today is 3/29 w/ no end in site. I have the SC trait & AvasNecro in my shoulders & hips. What's is so crazy is that I feel that way too. The hospital really does feel more comfortable than my house. I hope your hospital gets net access soon. Mine did & it's a BIG help! I have 3 videos on my channel that I recorded in the hospital. Please watch them.

  9. @PreciousMe03 I feel you bro… i have the same disease and it's really painful but no1 knows how painful it is… to be honest it is as painful as the time i got my leg's muscles ruptured… even more painful, but i feel comfortable in the hospital more than my house because the atmosphere there is so nice 🙂 only if there's internet in the hospital i'd prefer staying there more than my house.

  10. It's good to see alot of people doing very well with the sickle cell disease,because my teacher assigned my partner and I to this disorder,and just a few minutes ago,I was crying,looking how people can struggle with tht everyday,but now it seems like the more videos I click on,the more I see healthier lives with the sickle cell disorder !

  11. I KNOW YOUR PAIN. I HAVE THE DISEASE. I JUST GOT OUT THE HOSPITAL, WHEN I GET SICK IT BE REAL BAD. I BE IN SO MUCH PAIN. I BE FEELING LIKE DON'T NOBODY CARE CAUSE THEY DON'T UNDERSTAND MY PAIN. ONLY MY BROTHER UNDERSTANDS BECAUSE HE HAS IT. BUT I'M REALLY GLAD I WATCH THIS VIDEO. NOW I KNOW IT'S MORE PEOPLE THAT UNDERSTANDS THE PAIN I BE IN.

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