RARE Pride: A Queer Conversation with Cory Lewis

June 18, 2024

On June 11, 2024, Global Genes hosted a forum for stakeholders in the rare disease community to discuss their intersectionality as part of both the rare community and queer / LGBTQIA + community. Below is what one of the speakers, Cory Lewis, had to say:

Navigating issues and finding the right solutions is already enough when you have a rare disease. But then to add more stigma, hurt, possible neglect from being in. LGBTQIA community is not for the weak. Living with sickle cell disease and being gay has empowered me to live unapologetically me, with my standards high holding all accountability for my actions. So if I am not getting the right customer service, healthcare, or even energy, it’s now my responsibility to make sure it gets done one way or another. I’m proud to be myself, whether I’m gay, straight or trans in the rare disease community.

Intersectional identity as rare and queer

The key things going into intersectionality is to lead the conversation and set the tone of what you need done. Ultimately my sickle cell was overlooked because of my sexuality goin to the doctor or even just talking with family. They assume the worst because I’m gay but will not even stop to think maybe this is my sickle cell that’s preventing me to even control whatever issue I would be experiencing.

The impact on medical care

Your health comes first no matter the circumstance and many people don’t believe that. Sexual health and rare disease when it comes to the LGBTQIA community is imperative and needs to be explored. Many warriors should be comfortable to talk about their rare disease and sexual health where they both are intersecting in a cohesive way. Instead of making me feel bad for my sexuality before we even discuss my rare disease.

See what others had to say during this session:

Cory Lewis is a Sickle Cell Warrior and biology major with a focus on public health and biology at Emory University. He is the founder of the RedMoon Project and works full-time as a program coordinator with Sick Cells overseeing 170+ SCD ambassadors. He has joined GA BIO patient alliance, Rare Disease Legislative Advocacy, PhRMA We work for Health, and the Sick Cells PCORI 2022 Engagement Award. Cory pushes for more understanding of the uniqueness and cultural differences of sickle cell disease to identify important solutions to symptoms of SCD and explore research initiatives to highlight the underrepresented SCD populations and all patient-centered impacts.

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