My name is Ndeye Anta Sene. I am 22 years old and live in Maryland. I was born in Senegal, in West Africa and in December 2007 came to the United States by myself at age 16 due to medical issues.
My symptoms, including fatigue, shortness of breath, and dizziness, started at the age of 14 while still living in Senegal. I was admitted to a hospital for a month because the doctors could not determine a diagnosis. They finally came to the conclusion that I had severe anemia and the only treatment was blood transfusions. After a month, I was discharged from the hospital but still needed to return for a weekly platelet transfusion and monthly blood transfusion. That was my adolescent life. I can’t remember going to parties, concerts, or hanging out with friends because I was always spending my days at the hospital.
My family is very protective and caring. I think they were suffering as much as me during that time because they couldn’t accept the fact that this was going to be my life forever. They did everything they could such as taking me to every hospital in Senegal, buying expensive medicines, and even trying traditional remedies just to make me feel better. They eventually concluded that the treatment I would receive in Senegal was not working and maybe I could receive help outside the country.
Fortunately, I had an aunt, uncle, and cousins in the U.S. When I arrived here, it was very cold and I had never seen snow. My native languages are French and Wolof so I had a difficult transition because I couldn’t speak English fluently. It was the biggest challenge in my life. I felt lonely, and missed my family. As a result of my illness, I had to be admitted to the hospital a couple of times - but at least, it was a different environment. The beds were far more comfortable than the ones in Senegal. They had TVs, and the nurses were much more caring.
In 2008, my doctor who works at Howard University Hospital in Washington, DC, diagnosed me with paroxysmal nocturnal hemoglobinuria (PNH). I never heard of the disease. She told me there are two types of treatment: transplant and infusion. My parents decided that it was safer to choose the infusion because the transplant was expensive and risky. I was fortunate enough to be able to receive the infusion treatment because of the development of the drug, eculizumab (Soliris®). For my parents, it was a relief because they finally knew my diagnosis and the treatment for it. However, it was still a challenge for me because it meant going to the hospital every two weeks for my treatment for the rest of my life.
After five years of going to the hospital to get my treatment, I have finally accepted this disease. It is part of who I am as a person. This disease makes me feel special. I have learned so much, and have so many opportunities because if it weren’t for this disease, I would not be living in the United States.
I have learned to speak English fluently and have made new friends. In 2010, I graduated high school and I am in my third year at a community college majoring in nursing. I am in the process of transferring into a four-year university to get my bachelor’s degree in nursing, and hopefully my master’s degree and even PhD. In the spring of next year, I am hoping to transfer to the University of Maryland.
It is still hard sometimes because I think about how my life changed over time. I left my parents’ house when I was a teenager and I am an adult now. I had to be independent at a young age and learn to take care of myself. I am glad I went through all those struggles because I am happy with how things turned out and I love my life as it is now.
Besides believing in God, I have always had hope. In his 2012 reelection, President Obama said, “I have always believed that hope is that stubborn thing inside us that insists despite all the evidence to the contrary that something better awaits us, so long as we have the courage to keep reaching, to keep working, to keep fighting.” I think this is true because after all these years of struggling and fighting; I believe that someday I will be fine. That someday, I will never have to set foot in a hospital to get a treatment or maybe scientists will develop oral medication for PNH and other bone marrow failure diseases instead of receiving drugs through infusion.
My advice for people who are struggling with their disease is to have hope and think positively. Don’t make this disease a burden. Don’t let it own you or stop you from living life. Enjoy every moment of life. Like I said earlier, PNH is part of me. Going to the hospital is part of my routine. I go, I get my treatment, and I catch the bus to go to school. I will be just fine because I have a loving family, caring friends, and I have hope.