Lesley Holroyd on her short film “Born to be Heard”

April 24, 2024

Lesley Holroyd, who lives with congenital adrenal hyperplasia, discusses what she learned about filmmaking and telling her story in the film, “Born to be Heard” that she made with her RARE Compassion partner, Kayla.

I wanted to make my video to encourage others to speak up and raise awareness about living with a rare disease.  I had been raised in secrecy and silence and I finally had a platform to share my CAH journey.  The RARELy Told Stories workshop really helped me focus on how to make a film and how to get my message over in a short time. It had a lot of suggestions on the presentation and content which I had no prior experience on how to share my story. The workshop also gave me confidence to view myself on camera.

It was a wonderful experience working with the medical student, Kayla. She was supportive and fully engaged in making the video. I posted the video on my social media pages and sent a link out to personal friends. The response was amazing as many of my family and close friends were not aware of my rare disease. I was so conditioned not to discuss it. The flood gates are now open and I want to share my story with as many people as I can and I have CARES Foundation and Global Genes to thank for the encouragement and support in making my short film.

My advice is to just go for it and make a difference. Telling my story out loud has helped heal many of the fears and hurt of not knowing my CAH journey. Now that I’ve told it I want to share and hope it helps even one person not feel so alone like I did for most of my life.

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