Yesterday, I had the pleasure of sitting down with Dr. Kwaku Ohene-Frempong, President of the Sickle Cell Foundation of Ghana. I met Dr. Frempong as a child when I was a patient at Children's Hospital of Philadelphia, one of the best hospitals in the world. I remembered that Dr. Frempong was from Ghana and had opened several Sickle Cell Disease clinics there. I reached out to him back in January and told him I would be heading to Ghana for a couple of weeks and was interested in visiting the clinics. He was curious about my journey and inquired if I had taken malaria pills before my trip. I quickly explained that since 2014, I have worked as a Presidential Appointee under President Obama and as I was approaching my last day, I was ready for a vacation. Also, I mentioned that I decided not to take the malaria pills because I heard that if you have SCD, you can't get malaria. The calm and soft-spoken Dr. Frempong quickly became stern and said that I absolutely needed to take malaria pills and that people with SCD can get malaria which will cause serious health complications. He also stated that he would be in Ghana during my visit and would be able to meet with me during the clinic visits. Talk about perfect timing!
A couple of weeks later, with malaria pills in hand, and a quest for adventure, I was in Ghana. If you haven't been to Ghana, I highly recommend it. I loved the food, the people, and I learned a lot about their history and my own. The day had arrived for me to visit the clinic at 37 Military Hospital in Accra and I learned so much about the various obstacles patients and their families endure and stigma surrounding the disease. The clinic was planning a meeting the following week with the SCD patients and their families to hear about their concerns, challenges, and progress. The clinic invited me to speak about my experiences as a person living with the disease. The meeting was set up like a town hall and it forced me to reflect on my journey with the disease. Here I was in Ghana sharing with everyone that I have SCD but yet I haven't shared my own story back home. Moments like that brought me to the realization of Sickle Cycle. As I learn more about SCD, you will too. Yesterday, I asked Dr. Frempong questions about his foundation and SCD. I invite you to read the interview below.
Charlotte: Thank you, Dr. Frempong for sitting down with me today. As you are aware, I want to ask you a couple of questions about sickle cell disease. Are you ready for us to get started?
Dr. Frempong: Yes.
Charlotte: What is the difference between Sickle Cell Anemia and Sickle Cell Disease?
Dr. Frempong: Sickle Cell Anemia was the first term that was coined to described the disease and that's because all the patients who were seen with the disease had severe anemia with low blood counts. Their cells had been discovered on a microscope to be sickle shaped, a name that came from a German doctor. Sickle Cell Disease became a more genertic term. Later they found out that there are different types of the disease and to bring them all together, sickle cell disease was coined. It's a disease that has many different manifestations but only one is the anemia. Calling it anemia alone does not do justice to the complexity of the disease. Now when people use the term Sickle Cell Anemia, they are referring to the most severe type, SS. When they say Sickle Cell Disease, its more generic for the different types of the disease.
Charlotte: Which country has the highest rate of Sickle Cell Disease?
Dr. Fremong: The highest rate which means how frequent the gene is within the population would be Congo DR. Nigeria has the highest number of babies born with sickle cell disease every year. The countries with the highest number of babies born with sickle cell disease in order are:
3. Congo DR
Charlotte: What is the connection between malaria and Sickle Disease?
Dr. Frempong: Malaria has been probably the leading cause of death in young children in some parts of the world for thousands of years. There are many changes that occur in living things that we call mutations, changes in genes. The mutations are not purposely designed, they just occur. Some changes can be harmful or helpful. If it's helpful, possibly to help survive better in one condition as oppose to the other, it will eventually become more common in the population. Those that have that change will be in a better position to survive than those that don't have that change. After several generations, more survivors have the change. The sickle cell change or mutation is a very small change in the gene. It just so happens that children that inherited one copy of a gene from one parent and the sickle cell gene from the other parent (AS), when they get malaria as young children, the malaria is not very severe. They tend not to die compared to children with regular blood, who are AA.
Charlotte: In your opinion, who provides the best care?
Dr. Frempong: CHOP (Children's Hospital of Philadelphia).
Charlotte: Are you bias?
Dr. Frempong: [Laughs.] No, I only worked there for 33 years.
Charlotte: What are your top 3, already including CHOP?
Dr. Frempong: Cincinnati Children's Hospital Medical Center and UCSF Benioff Children's Hospital Oakland.
Charlotte: What about for adult care?
Dr. Frempong: University of North Carolina Hospitals (Chapel Hill), Duke University Hospital, and Grady Memorial Hospital.
Charlotte: And internationally?
Dr. Frempong: I know people will be mad at me but the best country giving the best care is France. The national health insurance system (in France) allows patients not to have to worry about the quality of care.
Charlotte: As you continue to work in Ghana, how can people support your foundation?
Dr. Frempong: We have 14 clinics currently in Ghana and we need 40. We need donations of money, time, and resources. We need trained people to be administrators, doctors, and nurses at the clinic. We are currently updating the website and when it is finalized, I will send you the link for you to share.
Charlotte: Great, will do! Any final words that you would like to share with the SCD community?
Dr. Frempong: Learn accurate information about sickle cell disease. Understand that there is a lot of work being done and every year brings new discovers. With research, we can help people live healthier lives.
To Dr. Frempong, Mi Da Si Paa!