Season 5, Episode 14: In conversation with Camryn Berry
→ About Camryn: Camryn Berry is a young adult living with Fibrous Dysplasia/McCune-Albright Syndrome. Through her experiences getting diagnosed with her condition as a child, growing up in rural Maine, she has had numerous experiences in her rare disease odyssey. Most importantly, being the first female child to receive a medication recommended by the NIH, ending her need for further surgeries.Now as an adult, Camryn is a remarkable individual who is paving a bright path forward as a “patient scientist”, a Ph.D. candidate at Boston Children’s Hospital and Harvard Medical School. She has a unique intersection of her experiences as a patient living with FD/MAS and a Ph.D. researcher studying the disease. This journey has highlighted the importance of incorporating patient perspectives in shaping research questions, study designs, and outcome measures that reflect patient priorities. She is committed to demonstrating how meaningful collaboration between researchers and patients can lead to more impactful and relevant discoveries.
→ What is Fibrous Dysplasia/McCune-Albright Syndrome?: Fibrous dysplasia (FD) is a rare disease where normal bone is replaced with scar-like fibrous tissue. This condition can occur in any bone in the body and can sometimes affect more than one bone. The most common sites for fibrous dysplasia are the bones in the skull and face - mine is in my left palate, cheek, and eye bone. Fibrous dysplasia can occur alone or as part of McCune-Albright Syndrome (MAS). In MAS, the endocrine system and skin are also affected.
→ Resources Camryn shared?:
@fdysplasiaorg
@everylifeorg
@foundationforfacesofchildren
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