CHAMPIONS AGAINST SICKLE CELL DISEASE
Carry* had been a patient of mine for a few years. She was young and full of promise. She came into my office to announce to me that she was pregnant. She was no longer going to be in my care because she knew her pregnancy would be high risk due to her sickle cell disease (SCD) and she was going to continue her pregnancy care at the university hospital. She had a type called hemoglobin SC. It is usually a less severe form of SCD. I called my colleague who was a specialist in Maternal Fetal Medicine. I knew I had placed my patient in capable hands. However months later I got a terrible call from my colleague. Carry had died. She had given birth to a healthy infant but within days of delivery she developed pneumonia and succumbed to the disease. The image of Carry telling me she was pregnant reverberates in my mind.
Penny* and I had a particularly close patient doctor relationship. She had walked into my office years before because she was having a complication from a procedure that she had done elsewhere. I was able to treat her safely and she made a good recovery. Then years later, she became pregnant. She was in her early thirties and she too had hemoglobin SC disease. I admitted I was nervous. I had not forgotten Carry. I will never forget her. I again transferred her to the university hospital but thankfully she had an uncomplicated pregnancy and delivery. She came back to visit me in my office and I had the pleasure of seeing pictures of her baby and commiserating with her about the ups and downs of motherhood
Then there is Claudia. She has SS disease. I have known her for almost twenty years. She lives in South Florida. We were introduced by mutual friends. I seldom see her but when I do it is always a pleasure. She is warm, loving and always greets me with a warm smile. But I know the other side. Despite her cheerful disposition, she is often in and out of the hospital. It has been so many times that perhaps even she herself has lost count. Her life has not been easy but she realizes she is still lucky. Many with her disease have not survived as long as she has. She has decided to remain single not necessarily because she wanted to but she decided not to “burden” any man with the responsibility of taking care of her health. She is determined to do her part to be an advocate. She is sharing her story to encourage other people with the disease and to raise awareness
The fact is it is a debilitating and deadly disease. It is most common among those of us who have ancestors from sub-Saharan Africa. And according to CDC (Centers for Disease Control and Prevention) one in 365 black or African American babies are born with the disease and 1 in 13 African American children are born with the trait. I don’t think that it gets the attention it deserves. Claudia’s request was simple. September is sickle cell awareness month. Put a poster on my Facebook page. I got distracted and it never happened. It’s September now but one year later. Claudia was at home in Hurricane Irma and luckily her home survived unscathed and her health was intact. It was still nerve wracking because she had to hope and pray that not only that her home remained safe from the storm but also that she would not get a pain crisis, the excruciating pain that people with the disease experience due to tissues in their body dying. It would have meant that she would need a hospital, a place that would probably have been impossible to get to in the storm. I failed her last September.
But then it struck me, maybe I can do more. Maybe you can do more. If you are a physician or a scientist, you can advance research or even develop a new innovation yourself. If you know someone or love someone with the disease perhaps you can donate. If you are affected yourself perhaps you can be an advocate, if your health allows.
But thankfully there have been champions for the disease. I had the honor to meet one such champion. Unfortunately it was in her final days and it was too late for me to congratulate her on her accomplishments. Her daughter shared some of them with me and I researched the rest. Her name was Yvette Francis-McBarnette. She moved to New York from Jamaica when she was only a small child. She was the second black woman to attend Yale Medical School. She specialized in pediatrics and spent much of her career dedicated to treating people with sickle cell disease. Her innovative use of antibiotics in patients with the disease saved many lives. So committed was she to her patients that she did additional training which she completed at the age of 52 so that she could continue to care for them in adulthood.
These women are champions for the disease. How about you?
*Names changed to protect privacy