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Living With a “Forgotten Disease”

photo of tristan lee
February 22, 2021

By Tristan Lee, as told to Jennifer Clopton

Many people call sickle cell disease (SCD) the forgotten disease because there’s so little understanding and awareness about it. I’ve always found that to be shocking because approximately 100,000 people in the U.S. have it. It affects 1 in every 365 African American or Black births.

I am one of them.

When I was diagnosed as a baby, nobody knew or recognized the disease -- at least where I lived. In fact, my family was told at some point that I was only the second person in my hometown of Williamsport, PA, to be diagnosed with sickle cell. That’s probably why it was such a difficult diagnosis to get. The doctors were baffled when my mom brought me in at the age of 6 months. They admitted me to the hospital, but the way she tells the story, they didn’t do anything. I just lay in the hospital crib, crying hysterically and nonstop. My mom, who was a new mom, grew increasingly frantic and called my grandmother looking for help.

“They keep telling me there’s nothing wrong with him,” is the way the family story goes. So my grandmother dropped everything and rushed to the hospital. As soon as she saw me bawling, she scooped me out of the crib and when she did, the blanket I was wrapped in fell off. That’s when she noticed how swollen my little left arm was. When she examined me, she noticed my legs and feet were terribly swollen too. My grandmother yelled at the nurses and said, “Look, something is obviously wrong.” Doctors finally paid attention and one eventually said, “I think I know what it is.” He ordered blood work that confirmed sickle cell disease.

My mom and grandmother had never heard of SCD when he told them. “Will he be OK?” was their question. The doctor’s answer was brutal. He told them to monitor me carefully and warned that the disease had a high mortality rate. He said I probably wouldn't live past the age of 20. I’m happy to say he was very wrong because today I am healthy and living well with sickle cell at 37 years old.

Sickle cell disease is the most common inherited blood disorder, which means it’s passed down in families, although we don’t know who in my family may have had it. Red blood cells contain a molecule called hemoglobin, which carries oxygen throughout the body. When these red blood cells are healthy, they are smooth, round, and flexible. But in someone with SCD, the hemoglobin has an abnormal shape, like a sickle or a farm tool that’s in the shape of the letter ‘C.’ That makes our red blood cells rigid and curved and blocks blood flow. This causes anemia and terrible pain crises anywhere blood flows through your body -- your chest, stomach, joints, and bones. Like other SCD patients, I have trouble keeping weight on, I experience swelling in my legs, hands, and feet, and my eyes can turn yellow sometimes. Patients with SCD are also prone to vision problems and infections.

The last major pain crisis I had was in my legs, knees, and feet, so I couldn't walk. My husband had to literally carry me down a flight of steps and out to the car to take me to the ER because I could not walk. When you’re going through all of that, you can’t be touched because your body is very tender -- it kind of feels like a burn all over your body.

Thankfully these don’t happen too often to me anymore. My SCD is well managed with a medication called hydroxyurea that makes red blood cells bigger and helps them stay flexible and round. I also take a lot of vitamins and supplements and stay hydrated to keep my blood flowing. I do regular checkups too, and at my last checkup, my hematologist said I’m doing great and am very healthy.

It was a long and painful road to get to the place where I am managing my sickle cell, rather than letting it manage me. When I was younger, I was constantly in and out of the hospital with pain crises. I used to get pneumonia often and had to use inhalers twice a day, take penicillin, and stay hydrated. Then when I was 9, I had a stroke, a common occurrence in sickle cell patients. It was significant. It paralyzed the left side of my body and kept me in the ICU for 6 months and then the regular ward of the hospital for another 6 months. By the time I was released 1 year later, I had survived but I couldn't walk or really talk, and I lost a little vision in the left side of my eye at one point. Several years of arm and leg braces and physical and occupational therapy helped me relearn how to walk, talk, use the bathroom, tie my shoes, and much more. I recovered about 80%, although that didn’t happen until I was 13. Even to this day, I still walk with a slight limp and have a little weakness on my left side.

Returning to school was tough. Kids laughed at me and ostracized me because I looked and sounded so different. I got depressed for a while, and then I found my way to the theater. I decided if people were going to look at me, it might as well be on stage! So I went to acting and modeling school and that set me on the path to discover my true passion: fashion. These days I am a professional model, actor, and a fashion designer. I use my fashion line, DiVo Stars, to raise awareness about this forgotten disease with style and grace. I do see fashion as medicine. After you’ve spent as much time in hospital gowns as I have -- and so many other sickle cell patients have -- clothes are a part of the healing process that help us find our way back to who we are. Plus they just make you look and feel good.

I got married 5 years ago too, and while I don’t know what the long term necessarily holds for me and my health, the truth is, nobody does. So my husband and I focus on the present and making the most out of each day. For me that means being a real ambassador for SCD. I work on this all year long but want to especially speak up this month for Black History Month and for Rare Disease Day. While other ethnicities can get SDC, there is no doubt in my mind -- and that of so many others -- that it is considered a forgotten disease because it affects so many Black and African American people.

I am speaking out now in the hopes of helping to change this. I don’t do this for myself because my life is actually going really well right now. I do this because there are babies being born every day with SCD and many Black patients with SCD still don’t get the attention and treatment they need when they go to the ER in a pain crisis due to various social or economic reasons.

My family and I pray every day for a universal cure, but I’m here to tell sickle cell patients that you don’t have to wait for that day to come. I want children and adults with this disease to know that they are never forgotten. I want them to seek help because there are treatments that really work and make a difference. I also want them to know that more and more of us are speaking up and speaking out and pulling for them to live a long and healthy life.

Tristan Lee is a rare disease advocate who is involved with the National Organization for Rare Disorders (NORD). He is currently featured in the international Rare Disease Day campaign as the U.S. Rare Disease Hero with Sickle Cell Disease. Follow him on Instagram. To learn more about sickle cell and other rare diseases, visit the National Organization for Rare Disorders at rarediseases.org. Rare Disease Day 2021 is Feb. 28. To get involved, visit rarediseaseday.us.

 

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