Know Rare Connect: Living With Myositis
Journalist Lindsay Guentzel describes navigating a diagnostic odyssey and how she manages day-to-day life with myositis in an impactful webinar.
As we close out Myositis Awareness Month, we want to share a powerful conversation in our Know Rare Connect series. In this webinar, journalist Lindsay Guentzel shares her journey with dermatomyositis, a rare autoimmune disease. Lindsay's rare disease story began with an infection in January 2023, which exacerbated her underlying condition and caused her to experience severe muscle inflammation. Initially, her symptoms were masked by the fact that they presented differently from typical dermatomyositis cases, as well as the assumption that they were the result of her active lifestyle. This all led to a complicated diagnostic path, but Lindsay's journey highlights the importance of advocating for oneself in the face of such obstacles.
This conversation delves into the challenges of diagnosis, the rarity of effective treatments, and the emotional toll of navigating life with a rare disease. Through sharing her story, Lindsay hopes to shed light on the complexities of living with a rare disease and inspire others in the rare disease community to feel less alone. “Every journey has the good, the bad, the ugly,” says Lindsay. “But one of the things that I have found to be very therapeutic has been sharing my story. Had I had somebody to turn to in those early days, I think it would have been a much better journey.”
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