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@lipodystrophyunite.bsky.socialOct 15, 2026, 11:30 PM

Our EL-PFDD made one thing clear: living with lipodystrophy goes far beyond lab results. Patients want treatments that reduce symptoms and daily burden, prevent complications, and improve quality of life. Thank you to everyone who helped!
#lipodystrophy #ELPFDD

Lipodystrophy United graphic titled “EL-PFDD Summary.” It reports approximately 100 in-person attendees and 400 online attendees. Participant type is listed as CGL 9.4%, FPL 77%, AGL 3.1%, unknown 6.25%, unsure 3.1%, and other 1.56%. Age ranges are 18 or under 3%, ages 18–34 25.4%, 35–49 41.8%, 50–64 25.4%, and 65 or older 4.5%. When asked how much lipodystrophy interfered with daily life in the past 12 months, 43.1% said extremely, 43.1% significantly, 13.8% moderately, and 0% minimally or not at all. Words used to describe living with lipodystrophy include exhausting, lonely, debilitating, frustrating, overwhelming, tiring, and hellish. The graphic also notes that 62% chose fatigue or pain as the one symptom they would remove with a magic wand, and 87% reported that lipodystrophy significantly or extremely interferes with daily life.Lipodystrophy United graphic titled “What Patients Need From Treatment.” It summarizes five treatment priorities with patient quotes: durability and peace of mind, one treatment for the whole disease, reducing treatment burden just to function at baseline, earlier preventive access before irreversible damage occurs, and treatment that allows for greater quality of life. Quotes emphasize wanting long-lasting treatment, treatment of the disease as a whole, less day-to-day management burden, earlier intervention, and treatment as an “umbrella” to help weather the storms.Lipodystrophy United graphic summarizing key themes from the EL-PFDD meeting. It explains that the burden of lipodystrophy extends beyond lab results and can include hunger, fatigue, pain, brain fog, temperature regulation challenges, serious health complications, delayed diagnosis, stigma, fertility challenges, financial strain, and fear about the future. It also describes treatment burden from injections, multiple medications, diet and exercise, appointments, monitoring, travel, insurance challenges, and side effects. The text emphasizes that better lab results do not always mean better quality of life and that patients want treatments that reduce symptoms, prevent complications, and lessen the day-to-day burden of managing lipodystrophy. It closes by highlighting the strength and determination of the community and the message: “Real People. Real Lives. A Healthier Tomorrow Is Possible.”