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What questions do you have about the forums or anything MD-related?
“Let’s Break the Ice”
As we continue to update and refine the muscular dystrophy forum space, please feel free to drop a few lines here about yourself and anything AMAZING that is going on in your orbit!
What do you want to share? What questions do you have?
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7 Replies
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Can we have a Sub-Forum for OPMD Patients only? Is that a thing here?
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That would be great. I am interested in that. More specifics on OPMD in this forum. Also how can we get more particapation on this forum..? Im wondering if fatigue is part of OPMD? and also what others are doing to keep up muscle tone and strenght…? I am taking Creatine and feel its helpful. im also wondering what others are doing for balance or trouble walking up starirs. Many Thanks
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Great to hear from you! I think the best way to spread the word about the MD forums…..is to spread the word! Seriously, please let others know that we are here. Encourage people to join and post. Bionews only relaunched this a little over a month ago, so we are still finding our way. As far as another channel goes, that is a question for @CrystalH so I will let her take that one.
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@Bobbie We are working on making that happen! We are promoting on social media, sending out emails, and preparing for some fun in-forum events. Stay tuned. But as Pat said, the best way to help is to spread the word, in-person and in the online communities you’re a part of.
Thanks for being here!
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I think one frustration is that MDN has been putting out a Graphic recently with various MD’s on it, including OPMD and some of symptoms for OPMD are missing. I saw this Post in a conversation on a Private OPMD FB Group and lots of people with OPMD were upset. The limb girdle weakness symptoms are missing. Here’s the MDA’s recent Factsheet on OPMD. https://www.mda.org/sites/default/files/2025/10/OPMD-Fact-Sheet.pdf
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Thank you @CrystalH
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My pleasure!
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