"Since I was 11, I've tried to spread awareness and advocate for sickle cell. I was the poster child for the local chapter of our Red Cross blood drives. I became a spokesperson and advocate for the Harrisburg, PA Sickle Cell Council. My Mom and I have marched on the Capitol [in Harrisburg] twice speaking to senators; developed a relationship with a congressman here to help us gain education for sickle cell at our local hospital; and marched on D.C. and spoke with representatives on behalf of sickle cell disease.
I have hosted numerous spoken word events for the cause, spoke about it in the newspaper, radios, and have been featured in different publications talking about sickle cell disease. My Mom and I are also trying to start a sickle cell chapter.
I think what the sickle cell community needs is for us to have way more of a public presence. We need to come out of the shadows of the past and step into the spotlight."
"[After] I had the stroke, I was out of school from October of one year until Christmas of the next. I was in second grade. When I went back to school, it was like I was an alien. Kids who I used to make laugh were now pointing and laughing at me. Friends and some of my family disowned me. I was constantly being made fun of because I had to wear an arm and leg brace on my left side.
I was mocked and called names because of the effects the stroke had on my body. I couldn't keep up with all the homework I had missed. I was depressed and not understanding why they couldn't understand I was still me. That went on from second grade until middle school.
Once I got to middle school it was the same, but I was different. I had a few good friends who understood me. I also discovered drama club and chorus. I always wanted to be in the spotlight, so when I was able to take those classes, I did. Since I knew people were looking at me, and talking about me anyways, I figured I'd give them something to look at and to talk about.
I joined the community theater and got different roles in plays. When I was age 15-16, I started acting and modeling classes. I graduated at the top of my class and received "Best Male Actor". Even though I had a stroke, I could still memorize lines and monologues. I went on to attend and graduate from another acting and modeling school in Atlanta, GA, which lead me to discover my true passion in fashion!"
"Growing up with sickle cell is one thing. Having to balance school at the same time is seriously hard. At the age of 9yrs old, I suffered a stroke in the right side of my brain which left me paralyzed on the left side of my body.
After the stroke, I had to stay in the hospital for 6 months in ICU, and had fluid [on] my right lung that had to be sucked out with huge needle while I laid in an incubator. Once I was released from the hospital, I had to start physical therapy, occupational therapy, speech therapy, and psychiatric therapy. I did those three times a week for two years.
I had to receive blood transfusions/ exchanges every 3 weeks up until I was age 19. That is when we had to stop those due to my age and the frequency I had been getting them. My doctor switched me over to Hydroxyurea, which I have been on ever since."
"Tristan is a #sicklecellwarrior and a fashion designer. He channeled his struggles after his stroke into art, fashion, and design. His fashion line, Divo Star, is aimed to raise awareness about SCD. Thank you @divostar615 for joining Sick Cells at the Dirty Goose in DC for an awareness event and fundraiser. 👏🏾🙌🏾#sicklecellawareness#sickcells #sickcellswigsout #facesofscd@thedirtygoose."
"I created DiVo Stars almost 5yrs ago. DiVo Stars spreads awareness about sickle cell by being out there for the public to see, continuing to raise money towards sickle cell charities, and making this 'forgotten disease' known with style and grace.
I believe that fashion can be medicine. I know every time after a sickle cell crisis, I want to get back to my own clothes and out of hospital gowns. It starts my healing process, and makes me feel good when I look good. That's also another reason [why] I dedicated my line to sickle cell awareness. "