I'm employed. I have a really good job and my employer is really good with working with my sickle cell, but I miss so much work due to my sickle cell. It's like I work, but I don't work. Even this last week, I was just in a hospital. I had to get a blood transfusion because my blood was low. I didn't think I was going to make it, but I'm here.
So 9 times out of 10, I'm in a hospital. Even though I'm employed, I'm hospitalized most of the time."
I've had a heart attack. I had to get my gall bladder removed, my appendix, my pancreas, it's so much I can't even remember. I had to get a blood exchange. Countless hospitalizations.
Right now I get a lot of blood exchanges. That's what really helps - blood transfusions and, of course, fluids and meds. The most part about me managing my sickle cell is drinking lots and lots of water. Resting, even though I don't get much of that because it's really hard being a mom. I have two kids.
"I have two kids, 10 and 4. They play football. They just have the trait.
A lot of people don't know about sickle cell disease until their child is actually born with it. It's disheartening because this is not a disease that's out there like cancer or other diseases where they have more funding and they do more awareness for it. When a child is born with it, they're like, 'what's that?'
If they got tested and found out earlier that, 'oh I have sickle cell trait and my possible mate may have sickle cell' it would prevent a lot of heartache and pain because no one wants their child to live with sickle cell disease.