Tuesday, 19 June 2018

"I have Sickle Cell disease but Sickle Cell does not have me"- Tiffany McCoy Sickle Cell Survivor #WorldSickleCellDay

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Tiffany McCoy has struggled with the effects of sickle cell disease. But today, thanks to advances in treatment, she lives a full and active life. Recently, she talked about sickle cell disease in a video created by the National Heart, Lung, and Blood Institute.

On living with sickle cell disease:

I've lived with sickle cell my whole life. I've never known anything else. I have 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 totally the opposite. I mean, people can live effective, prosperous, healthy lives. 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.

On managing a sickle cell "crisis":

A crisis is the hallmark of sickle cell disease–and a crisis is just pain–in 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, nonstop.

On relief through medication:

Growing up, I took penicillin every day to prevent any kind of infection. My brother, who has had many more complications than I, tried hydroxyurea when he was about 13 or 14, and he had every side effect the medicine could offer. So, I was afraid.
But, I started taking hydroxyurea in May 2009, and it has really changed my life. I haven't had a hospital admission in 13 months, and my blood numbers are wonderful. My doctor is totally pleased with it. I haven't had any negative side effects from the medicine.

On staying healthy:

It's much more important for me to stay healthy now because of my baby girl. The day she was born, they tested her for the disease, but I knew that she didn't have it because her dad doesn't have the trait or the disease. She does have the trait.
It's also important because I love what I do, I love my job, I love life. And it's not fun being sick. So, I do everything in my power to stay healthy. I take my medicines every day without fail. I don't smoke and never will. I do eat fairly healthy.

On living a great life with sickle cell disease:

Life right now is great. I'm healthy; I'm a mom to a beautiful little girl. I just bought a house, and I'm in school, getting my master's in healthcare administration. It feels great to know that when my parents tell me I can do whatever I want to do and be whoever I want to be, that I'm actually doing that now.
Having a good attitude affects any area of your life. I always try my best to have a good outlook on life. I have sickle cell disease, but sickle cell doesn't have me.

Source: medlineplus.gov
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