Fulcrum Therapeutics’ Post

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11,226 followers

1mo

Resilience is an all too familiar concept to those living with rare diseases and to those in the LGBTQ community. The stigma faced by both communities is significant, but when combined, it has an even greater impact. Researchers have found that the stigma associated with rare diseases (like stares or unkind comments) are magnified when that person is also LGBTQ. In this Voices of Rare interview, SCD patient advocate Tristan Lee gives us a glimpse of what that stigma is like and how he has overcome it. #voicesofrare #rarediseaseawareness

Transcript

At nine years old, I had a stroke, you know, due to sickle cell. So after my stroke, a lot changed with me physically. I spent six months in the hospital trying to relearn to walk, talk and kind of just do everyday things that come so naturally to everyday people. So I came back into the world that I left looking very different. I laid thought I would go back and be greeted as I was like, you know, the lovable, likable child that I left. Does, And that was not the case. I came back and it was like I was just some complete alien. And a lot of the kids who I thought were my friends were now making fun of me because of how I look. So I say all that to say that that experience kind of set me up for life as an LGBTQ person because, you know, we're constantly looked at as different. I was no longer shrinking back or trying to hide. I just wanted to stand out because that's who I was born. And just like with, you know, being a tattoo, LGBTQ people are, we are Born This Way. So there's no reason for us to try to shrink back. I'm never going to be anything other than who I am. And as far as LGBTQ, I always say in my community, I represent the LGBTQ SCD community. And this being Pride month, like I just want to broadcast that to the world. Like, I'm here and I'm not going anywhere.

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