Welcome to Doctors’ Notes, our newest contribution from Urban Health correspondents and husband and wife physicians Dr. Rob and Dr. Karla Robinson. The dynamic duo will be fielding questions about health, as it relates to African Americans. Please feel free to send them questions via firstname.lastname@example.org. We promise to keep it anonymous.
Although it affects approximately 1 out of every 365 children born in the African-American community, sickle cell disease remains a health issue that is often misunderstood. As a 38-year-old female living with sickle cell disease, Ensia Yaisreal is on a mission to change that. Once believing she would never live beyond 21 years of age, Yaisreal now knows she’s living a life of purpose to be a voice for those affected by this disease. Sickle cell disease, is a genetic condition that affects the shape and function of red blood cells. Red blood cells, normally round in shape, are responsible for carrying oxygen to the organs and tissues in the body. When people have sickle cell disease, their red blood cells are crescent shaped or “sickle” shaped. These abnormally shaped red blood cells get stuck in the blood vessels easily and are therefore unable to effectively deliver oxygen to the body. This often leads to episodes of intense pain, or “crisis” and severe complications including anemia, infections and blood clots, just to name a few.
Just like many affected by sickle cell, Yaisreal has experienced pain on a daily basis, been hospitalized multiple times, and has suffered many challenges and setbacks. But some of the most difficult experiences have been dealing with the perceptions of others who don’t have a true understanding of the impact this disease can have on those living with it. This often times includes the perceptions of some in the medical community as well.
Yaisreal describes often times refusing to go the emergency room for pain management even while having a debilitating pain crisis for fear of being treated as a drug addict looking to abuse prescription pain medication. “There have been several times when medical professionals will judge me and think I am a ‘drug seeker’ because nothing they do for me helps my pain”, she says. These experiences have taught her to not only be an advocate for herself, but for others who may be living with the disease.
Affectionately known as the “People’s Champ”, Yaisreal has been a sickle cell advocate for the last 25 years and her mission is two-fold. First, she wants to encourage all of those living with sickle cell disease to learn as much as you can about the disease, how it affects you, and potential treatments that are available so that you can be your own best advocate and beat the odds. She also wants the community to join in the fight against the disease by participating in blood and tissue donations.
There is extreme promise in blood and tissue donations in not only treating, but curing sickle cell disease. Bone marrow transplants or blood stem cell transplants replace the abnormal cells with healthy donor cells. Unfortunately this treatment is not performed very often for sickle cell disease in part because of the low participation of minorities in blood and tissue donor registries. While up to 80 percent of those living with sickle cell disease are African-American, only 7 percent of those listed on the bone marrow registry are African American. This makes it very difficult for those in need to find a suitable match or to have hope for a cure. Educating the community about the process of donation is vital as many don’t realize that signing up for the bone marrow registry is quick, easy, and painless.
Education also plays an important role in the prevention of sickle cell disease. “Know your genetic history”, says Yaisreal. “Genetic counseling before you plan your family could save you a lot of sleepless nights, pain, heartache, and fear”. A simple blood test will determine if you are a carrier of the trait that leads to sickle cell disease.
More than 2 million people are affected by either sickle cell disease or sickle cell trait. Therefore, chances are there is someone you know that has been touched by this disease. We can all do our part to join the fight to stop the spread of the devastating effects of sickle cell disease in our community. Let’s all remember to join Ensia Yaisreal and continue to spread awareness about sickle cell disease and encourage those in the community to participate in bone and tissue donor registries.
For more information on how you can be a donor and potentially save the life of someone living with sickle cell disease, please visit Be The Match.
It’s a health thing…we’ve got to understand!
About the Doctors:
Dr. Karla and Dr. Rob are the founders of Urban Housecall, a multimedia health and wellness resource, and also hosts of the Urban Housecall Radio Show. For more from the doctors, visit their website at www.urbanhousecall.com, like them on Facebook, and follow them on Twitter @urbanhousecall!