Rare in Common is a podcast about the unique stories of people affected by rare disease. Host Andra Stratton, a rare disease advocate, speaks with different members of the rare disease community, including patients, caregivers, healthcare professionals, and researchers. Join us as we tackle topics such as FDA approvals, national awareness campaigns, finding hope and support within the rare community, and the extraordinary challenges of living with a rare disease. Click. Listen. Feel.
Episode 29 – “It’s not going to control my life:” Adapting to life with LEMS
In December 2019, Tescha left her job of 16 years as a physician’s assistant in the emergency room after facing difficulties with her recently diagnosed Lambert-Eaton myasthenic syndrome (LEMS), a rare autoimmune disease that attacks the connection between nerves and muscle cells. While living at home, Tescha saw an opportunity to reinvent herself with the support of her family and her newly discovered love of woodworking. Even though LEMS was a part of her life, she proved it would not control her life.
25 Feb 2021
Episode 28 – #RareDiseaseTruth: how a hashtag is changing the conversation this Rare Disease Day
Approaching Rare Disease Day 2021, Neena Nizar, EdD, felt frustrated with the usual conversation around living with rare. Instead, she decided to start a different dialogue, sharing the hard truths of her condition.
What followed was an outpouring of global support, with individuals from many rare disease communities coming together to share their stories with the hashtag #RareDiseaseTruth. In less than 2 weeks, the hashtag reached nearly 2 million people, generating 7000 interactions and 5000 shares.
In addition to celebrating their strength this Rare Disease Day, the hashtag has given patients, caregivers, and leaders the chance to be vulnerable—and discover common truths that tie them together.
30 Jul 2020
Episode 27 – “It’s working time”: building Sophie’s Neighborhood
In March 2020, after a year of battling what was assumed to be arthritis, 3-year-old Sophie Rosenberg was diagnosed with multicentric carpotarsal osteolysis (MCTO), a rare skeletal dysplasia. In spite of their initial shock, her parents Lauren and Hosea immediately tapped into their entrepreneurial roots, creating Sophie’s Neighborhood, an advocacy organization dedicated to funding research for MCTO treatments. They now find themselves in the unfamiliar world of rare disease advocacy, fighting to change their daughter’s future.
And they need your help. Sophie’s Neighborhood is holding their next fundraiser on August 15, 2020.
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