{"id":11432,"date":"2020-07-17T10:43:19","date_gmt":"2020-07-17T17:43:19","guid":{"rendered":"https:\/\/mr66givry2.onrocket.site\/?post_type=family-stories&p=11432"},"modified":"2025-12-29T10:44:45","modified_gmt":"2025-12-29T18:44:45","slug":"lucie-griffiths-community-moderator-qa","status":"publish","type":"family-stories","link":"https:\/\/myotonic.org\/de\/family-stories\/lucie-griffiths-community-moderator-qa\/","title":{"rendered":"Lucie Griffiths: Community Moderator Q&A"},"content":{"rendered":"
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What is your relationship to DM? Are you affected and if so, what kind (DM1 v DM2) and when were you diagnosed? Do you have family members who are affected?<\/strong><\/p>\n

I was diagnosed with Myotonic Dystrophy Type 2 in 2018. It all started with the birth of my first (and only) child in 2007 at age 26. I had noticed that my arms hurt constantly holding my newborn child, which then progressed to grip myotonia.\u00a0 At that time, there was no previous family history and for many years my doctor thought I had an autoimmune disease. It was when my Myotonia, muscle cramps and intense fatigue became a constant and daily battle that I sought out a private neurologist whom specialized in neuromuscular diseases. I had read about myotonic dystrophy on the internet and felt sure I needed to be tested. Many months later, genetic testing proved I had DM2. Since my own diagnosis, my father has also been diagnosed.<\/p>\n

Did you start the \u2018Myotonic Dystrophy Support and Information\u2019 FB group? If so, when did you start it? Or how long have you been the administrator\/moderator?<\/strong><\/p>\n

No, I did not start the page but have been a member since 2014. I became one of the administrator\/moderators in 2019 as I wanted to be able to help share accurate information and support others.<\/p>\n

How many group members does the FB group have and what countries are the members from?<\/strong><\/p>\n

The group currently has 4,100 members and we are adding on average 20 new members every week. The group has members from all over the world.\u00a0I live in Australia.<\/p>\n

What are the most popular topics that the group members post about? Do you see certain topics\/questions repeated often?<\/strong><\/p>\n

I would say that the most common questions appear to be around how to go about getting tested, the actual specifics around how Myotonic Dystrophy is inherited and what medications there are to help.<\/p>\n

What is the best advice that you can give to someone who is newly diagnosed with DM?<\/strong><\/p>\n

My advice would be firstly, to allow yourself time to grieve; It\u2019s quite a shock to be told you have a progressive muscle disease. Secondly I would say read, read, read and then go back and read some more. This condition is rare and most doctors have never heard of it. You must be your own advocate and learn all you can about the disease in order to educate those around you.<\/p>\n

What have you learned from moderating\/managing the Facebook group and what do you hope the online\/FB DM community will look like in 5-10 years?<\/strong><\/p>\n

I\u2019ve learned that education and research must be ongoing, there\u2019s still so much about Myotonic Dystrophy that is unknown. I\u2019ve also learned that genetic testing is still not available to a lot of people. I hope that this changes soon so that it will be\u00a0easier for everyone to achieve, no matter where in the world they live. I hope the DM Facebook community in 5-10 years is still connecting people just as it does now. There\u2019s something so special in being able to \u201ctalk\u201d to others who understand the struggles you\u2019re going through.<\/p>\n

Find Support<\/h2>\n

Ready to join the conversation? Join Lucie in\u00a0the\u00a0„Myotonic Dystrophy Support and Information“\u00a0Facebook group.<\/a><\/p>\n

Looking for other support opportunities? Check out our virtual groups to connect with other community members and their loved ones from all over the world. Share your ideas, experiences, stories, and find support in the DM Community!\u00a0Find all the Myotonic Dystrophy Foundation\u00a0support groups here!<\/a><\/p>\n<\/div>\n<\/div>\n","protected":false},"featured_media":11433,"template":"","class_list":["post-11432","family-stories","type-family-stories","status-publish","has-post-thumbnail","hentry"],"_links":{"self":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/family-stories\/11432","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/family-stories"}],"about":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/types\/family-stories"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media\/11433"}],"wp:attachment":[{"href":"https:\/\/myotonic.org\/de\/wp-json\/wp\/v2\/media?parent=11432"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}