BATON ROUGE, La. (WAFB) - Friday, June 19 is World Sickle Cell Day. It’s a day to draw attention to the disease that mostly affects minorities.
“Just don’t look at it as a hindrance to anything in your life, my whole life I have tried not to do that. There are even a lot of things that sickle cell patients can’t really do, but there are also a lot of things that we can do,” Michael Paul says.
Paul was first diagnosed with sickle cell disease just two weeks after he was born. It is the type of disease that is carried through genetics and severely affects the red blood cells.
“So these tiny little bitty red blood cells that are shaped like a C should normally be shaped like a donut without the hole in the middle. Over time this causes problems for them because it causes blockages in the blood vessels. Blood flow that impairs oxygen to going to their tissue, bones, and other organs. So that’s why they have many complications including pain,” explains Tanisha Smith, a nurse practitioner with Our Lady of the Lake’s sickle cell clinic.
“People don’t realize how much it does affect us, how much it can make us tired or fatigue. We make plans to sometimes to do things with friends and then the next day you know we don’t show up because of sickle cell crisis has taken over,” Paul says.
Adakveo is the first and only intravenous medication approved by the Food and Drug Administration (FDA) to reduce the pain crisis for patients. These treatments should help patients, but there is still a long way to go.
“When the pain of the crisis comes, we just take it as it is. Then after that you know we keep on going. So, I would say for all sickle cell patients try not to look at it as a hindrance, but to just take it when it comes and then keep on going,” Paul says.
For more information on Oxbryta, click here.
For more information on Adakveo, click here.
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