|My name is Amivi. I am from Houston, Texas and I’m a mother, a business owner, and a sickle cell warrior.
As a child, I was always extremely ill with little-to-no clear reason why. Growing up in Togo, West Africa, I didn’t always have access to medical care, forcing me to live with the agonizing pain. However, that changed when my family moved to the United States when I was 9 years old. After enduring a particularly bad pain crisis, my parents took me to the hospital and I was diagnosed with sickle cell disease.
Growing up, my sickle cell was somewhat manageable. It wasn’t until my senior year of high school that I began to really feel the effects of this disease. I got extremely sick during that time and was not able to graduate on time. After graduating I began to pursue my college career, but due to a kidney infection coupled with a month-long hospital stay and a week in the ICU, I physically and mentally could not continue my classes.
Managing sickle cell disease has forced me to become hyper-aware of my triggers and surroundings. Stress can have a major impact on sickle cell symptoms, and my first marriage caused so much stress that my health was in jeopardy. During that period, I had two heart attacks, both of my knees replaced twice, one hip replacement, and one shoulder replacement from stress and constant crisis. Sickle cell had literally deteriorated my body. My doctor told me I had to leave the situation or I would die. I took her advice and I have not had any serious hospitalizations since.
If I didn’t have sickle cell I know my life would be so different. Sometimes I feel like it holds me back from accomplishing my dreams. If there was an accessible, affordable cure I would grab onto it and never let go. Managing this disease isn’t easy at all. Some days I can’t walk because of the amount of pain I’m in, and even on the days when the pain isn’t so bad, I still have body aches. When I’m at work I have to just push through the pain because I still have a daughter to take care of. This illness is terrible.
It is so important that the cure for sickle cell disease be accessible and affordable to everyone who needs it. There are already so many roadblocks to finding care and even qualifying for treatment –– high prices should not be a factor for patients. It is so unfortunate that they would price a lifesaving cure so high. It is insulting to those of us who have been living with this illness for so long. They are dangling it in our faces knowing very few can actually afford it. We must step up and say something.