Lipedema continues to be a medical condition with little known about it. Fortunately, dedicated research efforts are helping bring to light more information on how patients are impacted by this lifechanging condition. Finding the correct diagnosis for lipedema has been a struggle in many countries, with medical professionals not well versed on the symptoms of lipedema or making incorrect diagnoses. This struggle continues to impact those who are looking for a medical reason behind the changes in their body that lipedema has brought. Lipoedema UK surveyed 250 female patients of lipedema regarding their diagnosis, range of symptoms, efficacy of intervention support, and the experience of living with lipedema. The average respondent age was 44 years old, and they were primarily of British descent.
The Lipoedema UK research survey was conducted between September 2012 and February 2014 with eye-raising results. Important key findings that were reported by the study’s authors, Amy and Sharie Fetzer, show that:
• Only 9% of those surveyed had been diagnosed when reporting their initial symptoms.
• Assigned medical professionals appeared dismissive about lipedema and determined it was due to excessive weight and a lack of exercise.
• Participants felt relief when being diagnosed with lipedema
• The condition impacted more than half of the participants’ careers
• Lipedema created a significant emotional impact on their quality of life.
• 48% of respondents report having lipedema in their arms.
• More than 60% of the participants reported having difficulty in buying clothes, a low self-esteem, a restricted social life, and feelings of hopelessness.
• 79% of the participants were prescribed hosiery with 55% wearing it every day with difficulty and discomfort.
• 82% of respondents lost weight through dieting but 95% said they did not lose the weight evenly.
One of the more startling points found from the respondents was how difficult it has been for patients to receive a diagnosis of lipedema. Specific comments include that patients were told that lipedema “…did not exist” and that lipedema “…was untreatable.” Patients deserve better treatment from their physicians, especially with the trust and care its take to seek help.
Naturally, receiving a diagnosis has brought relief as patients are finally able to put a name to their onset of symptoms. However, this relief also brings frustration, as respondents wish further research and knowledge was available to make it easier. 60% of the respondents found the most useful information regarding lipedema on the internet, followed by lymphedema clinics, support groups, and specific lymphedema support.
The career and emotional toll of lipedema were also of significant importance with the survey findings. Hateful comments can come easy from those who do not understand lipedema and the emotional toll it brings.
The last significant finding of the research survey is the lack of knowledge regarding available lipedema treatment. Conservative treatment options such as compression wraps and Manual Lymphatic Drainage help but are not prescribed at the same rate. Another popular relief among the respondents was water aerobics, with 23% of them exercising in the water on a regular basis. Surgical treatments can help reduce the size of affected body parts, with 19 respondents indicating liposuction to be somewhat to very effective. In addition, 14 respondents received weight loss surgery, with 71% of them reporting somewhat to very effective results.
The Fetzer research analysis brings to light the thoughts and feelings of those who have been impacted through a diagnosis of lipedema or lack thereof. Common themes from respondent comments include finding a cure, wishing the medical field had increased knowledge of the condition, and having this research continue to drive awareness in the medical community.UK-Big-Surey-version-web