Tristan: Real Stories from People Living with Sickle Cell Disease

Tristan’s Story

I was diagnosed with sickle cell disease at 6 months of age in my hometown of Williamsport, Pennsylvania. At that time, I was only the second person in our city to be diagnosed with sickle cell disease. This was back in 1983, when there wasn’t much known about the disease. The doctor who diagnosed me told my mom and grandmother that I wouldn’t live past 20 years old. However, trusting in God, and having praying grandmothers and a family of faith, I am living well with sickle cell at age 37.
Life with sickle cell has had its challenges, especially in my younger years. When I was age 9, I suffered a stroke and spent almost 2 years in the hospital recovering. My entire life changed after I left the hospital.

I had to do years of physical therapy as well as occupational therapy, relearning to walk, talk, use the bathroom, and a lot of everyday activities people tend to take for granted. When I returned to school, kids were very mean and cruel to me. Adults were constantly looking at me weird. I felt very uncomfortable in my life at that time. I was depressed and constantly feeling sorry for myself.

Everything changed one day when I decided to try out for a play. I asked my mom if I could do it, and although she was apprehensive about it after seeing how people treated me, she still allowed me to try it. That’s when my life changed for the better. I made the play and was great in it. I noticed that when I was on the stage, people were still looking at me. But instead of looking at me for my disability, they were looking at me for my talent.

I began doing more acting and started modeling school about a year later. I really found my voice and came into my own. Walking the runway helped my balance and posture. Acting helped with my speech and my facial expressions. I was thriving despite what had happened to me. I had more confidence in myself. l felt empowered and positive about my life again. After I graduated from high school, I continued to pursue acting and modeling. I got some real acting work on TV shows as well as becoming a professional model in New York City, doing multiple photoshoots with celebrity photographers. Still to this day, I am doing those things, in addition to having my own fashion line that I created for sickle cell disease awareness, called DiVo Stars.

As an independent fashion designer, I did fashion shows for Harrisburg Fashion Week, Baltimore Fashion Week, and New York Fashion Week, spreading sickle cell awareness through fashion in each of these places. I even created and produced three New York Fashion Week shows in my hometown as fundraisers for sickle cell charities I’ve worked with over the years.

Currently, along with being a professional model, actor, and independent fashion designer, I’m a professional patient advocate for the Sickle Cell Disease Association of America (SCDAA), the Sickle Cell Pennsylvania Sickle Cell Council, and Sick Cells. I am also a peer mentor for the SCDAA, helping youth with sickle cell disease transition from pediatric care to adult care. So while life with sickle cell disease has had its challenges, it has also given me so much strength, compassion, and heart. It has brought things across my path that may never have been there had I not had it. So that’s it. That’s my sickle cell success story.

I’m sharing my story so others can read about people who are living WELL with sickle cell. This year, I have been fortunate to work with the National Organization for Rare Disorders and be the Rare Disease Day Hero of 2021 in the United States, representing sickle cell disease. My story has been shared nationally as well as internationally during the month of February. It’s really been a blessing. I hope that this can make a difference in helping to bring the public health data on sickle cell disease to life and help others who are living with sickle cell disease.

Tips for Others

My advice to kids growing up with sickle cell disease is this: There will be times when this disease will be draining physically, emotionally, and mentally. During those days and times, it will feel like “it’s too much,” and there will be days when you feel like “why me” or feel like you just want to give up. When those times come, just know that you are not alone. All sickle cell warriors go through it, are going through it, and living through it. You are stronger than sickle cell. Just take good care of yourself and never give up. Keep faith that God will never leave you and lean on him when needed. We are sickle cell WARRIORS, which means we were made for this battle. You got this, and your life will get better. You have a purpose, and a destiny like no one else on the planet. There is a whole community of support to help you, listen to you, and that truly cares about you and your life. Keep telling yourself even though you have sickle cell, sickle cell will NEVER have you! Stay strong, and please keep fighting for your life because your best days are still ahead. God Bless.