BDO talks candidly with fashion designer & sickle cell patient, Tristan Lee, who describes how he uses fashion to bring awareness and even a cure to the disease.
Tristan Lee: So my story begins when I was 6 months. I was diagnosed with Sickle Cell Anemia SS. I was one of only two cases in my hometown of Webster, Pennsylvania at the time. And doctors told my mom that I would not live to be20 years old and I'm actually by the grace of God, thirty-five years old. So my mom and my grandmother you know being a praying people believe that I would surpass what doctors say because you know it's not Man final word it's God that has the final word. And they instilled that in me as a child. And that's kind of how you know I became so strong in my faith. And it's led me to leaps and bounds beyond what man has said about me having sickle cell.
BDO: What was your childhood like living with sickle cell?
Tristan: My childhood up until I was about nine years old was pretty normal. And I was a normal kid running around playing just being with my friends laughing cracking jokes. Then when I was nine years old I suffered a stroke which left me paralyzed on the left side of my body because the stroke happened in the right side of my brain. I was in intensive care for six months. I had needles and tubes all throughout my body. I was on a ventilator and after I got out of ICU I spent another six months in the hospital. Just you know recovering and then finally when I was released I had to undergo physical therapy and occupational therapy for the next two years. And so when I returned to school I was a changed person not so much that I was changed on the inside but I was physically changed on the outside due to the stroke and kids at the time. You know I didn't understand what was going on because they saw me leave as one person and then come back for another in their eyes. And after the stroke, I could not open my hands my left hand and stayed in constant ball. And so I was like 15. And then through you know physical therapy and that stuff, it changed. But up until that time kids you know we're constantly making fun of me, constantly you know talking about me, I was getting different looks from adults even. And I figured you know since people were looking at me anyway I should give them something to look at. So, I used my talent and I pursued acting. I joined our local theater group and I was prominent in that. And so about 15. And then after that, I jumped into modeling and from modeling you know being on the catwalk and everything. I regained my balance and my posture got better and my walk got better. My attitude you know it was just a huge confidence boost. And so then about twenty, I became really interested in fashion and fashion design, so I decided to pursue that more. And I was doing modeling I was approached by my colleagues Sudbury photographer and I did a photo shoot with him and we still keep in contact to this day. Mike has been a huge influence on me in my life and he continues to be a huge mentor to me. And through that I was led in to pursue any fashion design. I am actually a fashion designer now. I have my own clothing line for sickle cell awareness. It's called Devo Stars. And I did it in the past five years I was creating it. I started a bootleg five pieces and now I have a collection that has 35 kids or men's and women's pieces in it and I just did New York Fashion Week last month in September.
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BDO: Can you tell us a little bit about your medical history? What kinds of doctors are you seeing and what were they telling you as you were growing up and transitioning from being a child to an adult?
Tristan: When I was a child I had a lot of doctors and especially in Webster, since I was only the second person diagnosed with sickle cell in the area. They really didn't know like how to treat me. And I had to go to Geisinger which is in Danville Pennsylvania about 45 minutes outside of Webster. And The doctors there really knew you know more about sickle cell. So that's kind of where I got the best treatment and the best answers as far as you know how to deal with childhood sickle cell. Others put on penicillin and I was given some blood transfusions to start and especially after the stroke happened they really amped me up on blood transfusions from the age of 9 until the age of 19. Every three weeks I would go get blood transfusions at Geisinger and then about 15 I started doing forrecess. Forrecess is basically an exchange. They take you and there is this HUGE leg machine that's like a washing machine almost. So they connect two different needles inboth of your arms. So you have to lay there like really still for like the duration of it mostly and the blood they take out of you has been washed in this like huge washing machine and its filtered. And then they also hang this I.V. blood and that's raw is what I was getting because you know I had iron issues. So after that I finally got too old. They said to you know continue with forrecess and blood transfusions. So by that time hydroxia had come about which was a huge godsend and a blessing because you know I was tired of getting poked. My veins were like iron and they still are today like I am under here completely used up. When I do go get blood or have blood test done, they have to use my hand to...
... kind of go cause everything up here is this like steel. When hydrosyria came about you know it was just like a huge breakthrough. And I'm doing very well on that. Even to this day it's been probably 16 years that I've been on that. And like I said it's been a huge godsend. And so that happened to take me over now I just take three pills a night and I'm pretty good.
BDO: What are some things about sickle cell disease that you want people to know?
Tristan: So what I want people to know about sickle cell is that it is not the same as it used to be with new medicines and new technology. Sickle cell is expanding people's lives. People are living well with sickle cell and it's because you have sickle cell does not mean that it has you. You can lead a full healthy life with sickle cell and just continue to pursue all your dreams and just continue to do whatever you want to do just keep God first and just continue to strive and know that people are living well into their 90s and their 80s and their 60s with this disease like you are strong and you are here for a purpose. You are a warrior and your life means something and let people everywhere you go know that you are sickle cell strong.
