Rare With Claire - Part 1 with Sarah Mumper McCune Albright Syndrome/Fibrous Dysplasia Interview

Описание: Claire Barrow interviews Sarah Mumper, a rare disease advocate who has McCune Albright Syndrome/Fibrous Dysplasia. Part One of Two.

Sarah, "My name is Sarah Mumper and I am diagnosed with McCune Albright syndrome. Some of you may not know what that is but I’m here to let you know. MAS is a rare genetic disease that affects my skin, my bones (fibrous dysplasia), and my endocrine system. Because of this rare disease, I have a physical disability and utilize a wheelchair, crutches, and a walker.

I grew up being very blessed with a support system and resources that have bettered my life and the outcome of my disease. I’ve had many incredible experiences that have given me insight that I feel helps others going through the same if not similar journey. For the past several years, I’ve had parents and other individuals who are also diagnosed with MAS/FD reach out to me through my social media wanting to know that they’re not alone and that there is hope.

That has led me to want to create a platform that is easily accessible for them to reach out to me, and for others who are experiencing difficulties navigating a chronic or rare disease. This platform is also an opportunity to end the stigma that surrounds disabilities. Please know that I can only speak from my own experiences and more specifically to physical disability challenges. I do continue to educate myself on other disabilities as well as creating a safe space for those who don’t have support through their journey.

Thank you again to those who continue to follow and give your support and love through everything I do!"