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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
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/.
Replies to "Hello @iamrare2, Welcome to Connect. I thought I share a few links in case you haven't..."
Perhaps add the Fat Disorders Resource Society to your sources. I worked with Dr Karen Herbst in 2006-2010 to form the non profit and was it's founding President. This non profit has annual national conferences open to the public with many specialist speakers and workshops focusing on Dercum's Disease, Lipedema, Madelungs Disease, and Familial Multiple Lipomatosis. There is a conference coming up next month in Atlanta. Dr Herbst is now viewing DD as a loose connective tissue disease. (And yes, I have DD too.)
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@johnbishop Hi John, I am aware of those sites. Thank you.