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Which advice would you give to someone who has just been diagnosed with Oculopharyngeal muscular dystrophy?
Advice for the newly diagnosed with Oculopharyngeal muscular dystrophy, written by people who have lived it. What they wish they had known on day one.
Find support in OPMD knowledgeable clinicians and find support groups on social media.
Posted Jan 6, 2026 by OPMD Association
Join our OPMD support group OPMD Oculpharyngeal Muscular Dystrophy runs in my family and follow us on Twitter @OPMDawareness
Posted Apr 27, 2017 by OPMDAWARENESS 1000
Just be positive, do not let this disease to limit your life and have a lot of hope to have a cure very soon!
Posted May 18, 2017 by Monica 2150
Just do your best every day. Don't let the disease define you.
Posted Oct 27, 2018 by Llauren 1300
Find support groups on line. Reach out to the MDA group in your area. Let these people become the faceless friends who become your rock to rest on when the day overwhelmed you with uncertainty. Research and learn what you can do to maintain your quality of life. Remember that almost all of us are senior or early senior citizens and life isn’t always fair at this point fir us. Don’t allow a disease to rob you. Know your limits and live life to its fullest everyday.
Posted Feb 22, 2021 by James 2500
