By Tristan, Sickle cell anemia, United States, January 5, 2021
Hello everyone! My name is Tristan from the United States and I am living with Sickle cell anemia.
My passion in life is fashion, design, and entertainment. I am a professional model, an actor, and a fashion designer who has a couture, and ready to wear fashion brand for Sickle Cell Disease Awareness that I created, called DiVo Stars, and Haus Of DiVo. I love to sketch, and create new designs for my brand. When I see someone in my clothes, and see how it makes them feel good about themselves I get so much joy from that.
I also love being a professional patient advocate, and Peer mentor for Sickle Cell Disease. Being able to raise awareness for my community, and invoke change makes me feel so full. Being a Peer mentor, and being able to help young people who are transitioning into adult care from paediatric care is incredible too. Just knowing that I am able to help my mentees easily transition through that process is wonderful.
I have such a heart, and love for the SCD community, and I just want to continue to be a light in this world for all of us, and get us to the better days that are no doubt coming where we have a cure for Sickle Cell Disease.
For me the challenges of living with a rare disease vary depending on the weather and season. I find that in the summertime when it's hot, and humid out I can't really go outside until the evening, or night. The heat makes me very lethargic, and at times I find it harder to breathe. So on those days I can't really do as many outdoor activities as I would like during the day. Then on the flip side in extreme cold weather I tend to have more aches in my bones, and pain in my joints at times. Which makes it a bit more challenging to accomplish some physical tasks like lifting weights. So I am constantly trying to find a balance during those times.
Without having this disease I may have never fully understood, or grasped how important it is to advocate, and stand up for a community of people living with a rare disease. Ensuring that they are heard, and represented in a world where they can be misunderstood, and even at times made to feel like their lives are worth less, simply due to something out of their control.
I do believe that this disease continues to be a driving force for me to live every day to my fullest. When you have as they say "a life threatening disease" like Sickle Cell it really opens your eyes to value your time, and the time of those around you more. I feel this disease has enabled me to not worry or focus so much on the miniscule small things which sometimes seem bigger than they are. You compartmentalize, and begin to realize ok this matters more than that, and my time with this person is more meaningful right now than the time I give to stressing about something that really isn't as valuable, or precious. So I truly do believe that this disease has enabled me to focus, and respect not only my life, and the time I have, but also others’ lives, and the time I have with them.
I take comfort in knowing that despite everything I go through in this life, and in this world that at the end of the day I can tune out all the craziness and haters in life. Go home, and enter into my safe space where I have love, and am loved. Just thinking of that brings me joy.
My Mom, and my Nan-Mum (Grandmother) have always cared for me, and been there for me since day one. When I was first diagnosed with Sickle Cell Disease at 6 months old they protected me, and fought for me, and my life. Even when the doctors were telling them I wouldn't live past the age of twenty. They showed me unconditional love, and support. They showed me how to be FIERCE, and unafraid in a world that would have many obstacles for me to overcome. They're strength, and courage showed me what it meant to be a strong person in this world.