… emergency department in terms of the anemia that it causes because the red blood cells are fragile. They don’t circulate well they get stuck in circulation causing blockages and pain but they also break open they don’t live as long. These red blood cells or individuals are anemic and they get very tired. They mean the blood transfusion. So what’s important I think to understand is that this is something people are born with. You can’t catch it but you can certainly pass it on. So it does tend to run in families. But the only way to know for sure you know for sure whether or not you have sickle cell disease is to get tested for it. Talk to your doctor about it because even though you might not think that it runs in your family it could you just want to know.
BDO: I want to go through some quick myths with you. Just so we can be clear about different things. So if someone has the trait sickle cell trait can they have those pains?
Biree Ademariam, MD | Chief Medical Officer, Sickle Cell Disease Association of America: That’s a really important question. So sickle cell trait is not considered a disease and it does not cause pain. However, under very extreme circumstances like very high altitude. Dehydration. We’ve seen in people in the military who have been stationed in deserts who are dehydrated and under really hot conditions that they can have what resembles the pain crisis. But generally speaking the 1 in 12 African-Americans who carry a sickle cell trait and probably don’t know it will never have any complications associated with it. But it’s important to know you care to tree because you run the possibility of having a baby with sickle cell genes and not being prepared for it.
BDO: Which was my next question. So in your part if you have if I have sickle cell trait and my partner does not. Is it still possible that our child can have sickle cell disease or do we both have to have that trait?
Biree Ademariam, MD | Chief Medical Officer, Sickle Cell Disease Association of America: So the answer actually is yes. And the reason is because there are other types of traits that affect red blood cells that aren’t necessarily sickle cell trait but when they’re combined with someone who has sickle cell trait can result in something that looks just like sickle cell disease. It’s called beta thalassemia a trait thalassemia trait and a lot of people carry thalassemia trait and don’t know it. So the best thing to do is to go to your doctor and ask for a test not just for sickle cell trait but for any red blood cell trait.
BDO: And so can you tell us more about the SCDAA and what you’re currently doing to educate everyone about sickle cell?
Beverly Francis-Gibson, M.A. | President & CEO, Sickle Cell Disease Association of America: Definitely. I will tell you that SCDAA has been around for 46 years where the Sickle Cell Disease Association of America because our goal is to advocate for individual’s family’s caregivers living with sickle cell disease. We also help our member organizations which we have 44 nonprofit organizations across the United States and they’re providing direct service advocacy and care to families and individuals living with sickle cell disease. We also advocate for legislation to support patients and families living with the disease. And I will tell you our ultimate goal is to have a universal cure for sickle cell disease that we should all celebrate with our constituents across the country. And I would say globally.
BDO:I know you have a personal story with sickle cell although you don’t have it but it was in your family can you share that with us.
Beverly Francis-Gibson, M.A. | President & CEO, Sickle Cell Disease Association of America: Sure. When I was in high school I have a cousin who’s since passed away. And I remember my mom calling and letting me know thatVincent had passed away. And the thing that was tragic was that in my family we never discussed it. I knew that he was sick because he couldn’t play and I grew up in the Caribbean. So it’s very hot and there were times when he couldn’t play. His eyes were really yellow and jaundiced from my recollection. But the thing that was striking for me was that we never talked about him. To this day now we’re talking about how he died or what was the cause of death. And I will tell you when I was accepted as President of the SCDAA and the announcement went out to families and friends many people actually contacted me to say I didn’t know that the disease sickle cell still existed. And even more so, I didn’t even know…