In the last two years a survey of 250 women in England with lipedema was published. It found that only 9% of the study participants were diagnosed correctly by their healthcare provider when they first reported their symptoms. The overwhelming majority, 91% of the study participants, expressed great frustration with medical communities’ poor understanding of lipedema.
While the plurality of the patients first learned of their disease from lymphedema therapists, only 5% were diagnosed by their primary care physician. Most survey respondents reported that their lipedema symptoms began at puberty and that their primary care physician was dismissive of their symptoms and misdiagnosed their lipedema. The average age of diagnosis from the survey respondents was 44 years of age, which contributes to the overall feeling of anger and frustration over how long it took to get a diagnosis.
The survey further reports that 51% of respondents reported that lipedema impacted their ability to carry out their career. They reported lipedema interfered with their mobility and inability to stand or sit without significant discomfort. 40% reported that lipedema restricted their career choices. When asked, 95% reported difficulty purchasing clothing, 86% reported low self-esteem, 60% reported a restricted social life, 50% reported restricted sex life, and 87% said lipedema had a negative emotional impact on their quality of life.
