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Advocating for My Sickle Cell Abroad



When I was 30 years old, I traveled to Ghana to teach high school girls biology and activism skills for their burgeoning social justice movement. I happened to be in the latter part of my first trimester of pregnancy with my daughter. Everything was going well, and I had a provider who was monitoring my health closely while I was in Ghana for three months. During my stay, I suddenly contracted a staph infection in my left eye which caused me to go temporarily blind. To make matters worse, I lived two hours away from the only hospital that was equipped to take care of me. 

Coincidentally at the same time, my pediatric sickle cell team from Philadelphia were in Ghana’s capital, Accra for the World Sickle Cell Conference. With their connections, I was able to get seen at a military hospital and what was considered the best hospital in Ghana. 

When I was admitted, I quickly gathered that while the hospital staff were nice and accommodating, they lacked knowledge of sickle cell disease and how to treat my pain. A nurse attempted to give me 20 mg of morphine when the order called for only 0.20 mg of morphine. Through the pain, I had to show her the proper dosage and thankfully with the medical training I had, I was able to administer the morphine myself. 

At this point, I was blind in one eye, pregnant and experiencing an excruciating sickle cell pain crisis from a staph infection that could only be managed by pain medicine. My hemoglobin dropped dangerously low, but I could not get transfused until I reached London or the US. The dilemma was I wasn’t well enough to travel outside of Ghana. I was honestly scared I would die in Ghana alone. I tried to remain as optimistic as much as possible and decided I needed to use everything in me to survive. I knew I had to continue to advocate for myself to get healthy enough to fly back to the U.S. and return home.

Through self-advocacy, I was finally able to reach to a point where I was able to fly home to get the treatment I needed. With a full blown pain crisis, I flew back to Philadelphia, an 18 hour trip, alone. When I touched down, I was rushed to the hospital.

I believe I came out on top because I didn’t give up and succumb to my circumstances. I learned many invaluable lessons from my experience in Ghana. I was determined to live and keep my unborn child safe in spite of all the medical, linguistic, and social barriers I was facing. 

Today, I am a woman who wears many hats. I am a sickle cell warrior by inheritance, a patient advocate by passion, a Muslim by faith, a wife by marriage, a mother by birth of my daughter, a founder of a non-profit and a clinical researcher by way of education and career-choice. I encompass all of these roles, which makes me a great ally to others and showcases the resiliency of living a full life with sickle cell disease. 

I never let sickle cell complications get in the way of doing what I want and need in order to make myself happy. I am on my way to becoming a nurse practitioner, so I can have a larger impact on people who live through the dire circumstances I live through, adults with sickle cell disease. 

If you take anything away from my story, it should be this: remember that you are always your biggest and most important advocate. As sickle cell warriors, when something doesn’t feel right, we need to say something immediately, because there could be life or death consequences. Speak up and out at all times.



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