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Dercum’s Disease: Let's create a support group
Chronic Pain | Last Active: 3 days ago | Replies (119)Comment receiving replies
@colleenyoung I was wondering if there is a way for people with Dercum's Disease, FML, Adiposis Dolorosa and Lipomas to have it's own support group? The disease has not been proven to be an autoimmune disorder or any other disorder. I don't think it should be categorized as is. Classifying it under autoimmune makes it difficult to find help when searching the site. I believe that the people (I'm one) who suffer with the rare disorder of Dercum's or Lipomas alone should have a support group for themselves. It would make it simple for us to find the group and easier to reach out to each other. I also think that the Mayo Clinic will benefit and find that there are many more people with these conditions. which can in turn will let them see and understand how critical research is needed in this field of medicine. Thank you for any help you may provide with my request.
Replies to "@colleenyoung I was wondering if there is a way for people with Dercum's Disease, FML, Adiposis..."
Welcome @iamrare2, I love the username. As you know Dercum's disease, familial multiple lipomatosis (FML), adiposis dolorosa or lipomas are rare conditions. Thank you for pointing out that this discussion was misplaced under the Autoimmune Diseases support group. It has been moved to the Chronic Pain support group.
Let's work together in this discussion thread to build enough activity to create a Dercum's disease-specific group. I'll get us started by tagging fellow members @vowelmistress @pamelars60 @hippygrandma @jillo65 @mariettepr @floann, who have mentioned living with Dercum's, familial multiple lipomatosis (FML), adiposis dolorosa or lipoma.
@iamrare2, can you kick off the discussion? How long have you been living with Dercum's? How are you managing with daily life and the symptoms you deal with? What tip would you share with someone new to Dercum's?
Connect
Hello @iamrare2, Welcome to Connect. I thought I share a few links in case you haven't already seen them and hopefully provide more information for members with this rare disorder.
-- The Dercum Society - Helping make sense of Dercum's Disease: https://dercums.org/
-- Adiposis dolorosa: https://rarediseases.info.nih.gov/diseases/5750/adiposis-dolorosa
-- Dercum’s disease (adiposis dolorosa): a review of clinical presentation and management:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6911249/.