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Learning from others who live with Rare Diseases
ALS is a life-changing diagnosis, and like many newly diagnosed patients, I was disappointed and frustrated at what felt like a standstill in medical progress against the disease. “If they can send humans into space, why can’t they cure ALS?” I’d lament,
Now, 11 years later and with still no cure, I realize I wasted a lot of time and energy worrying about ALS, and not being patient and learning to live with it.
Easier said than done, you might say, and I agree. But something that helped me was to recognize that there was a larger community of rare diseases and that if its members paid attention and learned from one another, we wouldn’t feel so alone in our individual challenges.
Did you know that Bionews Services (parent company to ALS News Today) gives a voice to 50+ Rare Diseases? Here is link to connect you to their communities: https://bionews.com/about/
Recently I wrote about how the TV actor Michael J Fox (who has been living with Parkinson’s disease for 30 years) inspired me: “What We in the Rare Disease Community Can Learn from Each Other”
Do you follow the writings of others outside of the ALS community who live with a Rare Disease? If so, share links to their interviews or work. Tell us what inspires you about them.
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1 Reply
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Someone living with a Rare Disease, whose experiences we can relate to is Jen Cueva, who has pulmonary hypertension. I found her recent column, “10 Lessons PH has Taught Me in the Past 17 Years” – – inspiring, relatable, and full of wisdom we all should be following.
https://pulmonaryhypertensionnews.com/2022/02/09/10-lessons-ph-taught-me-17-years/
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