Fatigue was reported by 98% of patients with autoimmune disorders polled, and fatigue that prevented completion of everyday tasks was reported by 68% of the patients, according to a press release from the American Autoimmune Disease Related Diseases Association.
The American Autoimmune Disease Related Diseases Association (AARDA) conducted an online survey of 7,838 patients with autoimmune disorders who were recruited through the AARDA’s Facebook page, by outreach to the Autoimmune Awareness and Education Forum Facebook group, and via email to the National Coalition of Autoimmune Patient Groups, a network of 37 disease-specific patient groups.
The survey was accessible online between Feb. 7 and March 2. The fewer than 0.5% of respondents with only non-autoimmune disorders, such as fibromyalgia or chronic fatigue syndrome, were excluded. Results from the survey were presented recently at an autoimmune summit in Washington, D.C.
Respondents were 95% female, 46% of whom were of child-bearing age. Eighty-two autoimmune diseases were reported, including rheumatoid arthritis, systemic lupus erythematosus, Sjögren’s syndrome, polymyalgia rheumatic, scleroderma, dermatomyositis, ankylosing spondylitis, juvenile idiopathic arthritis, vasculitis, psoriatic arthritis, Raynaud’s phenomenon and many others. About half (49%) reported having one autoimmune disease, 29% reported two diseases and 22% reported having three or more autoimmune diseases.
Ninety-eight percent of respondents reported having fatigue, and 89% described it as a “major issue” in their daily lives. Three out of five (59%) reported fatigue as “the most debilitating symptom of having an AD,” and 68% reported “profound” fatigue that prevented completion of everyday tasks. About 87% reported discussing fatigue with their physician, but 59% said they had not been prescribed or recommended any treatment by their provider. Seventy percent said they believed they were judged negatively by others because of their fatigue, according to the survey results
“In this busy, busy world, it’s normal to be tired, but the kind of fatigue autoimmune disease patients suffer from is anything but normal,” Virginia T. Ladd, president and executive director of AARDA, said in the release. “The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a ‘fuzzy’ symptom, it’s real. Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It’s time we bring more research funding to this issue to advance understanding and effective treatments for fatigue.”