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Commonly I am corrected with the bold statement “you mean lymphedema?” No! I mean Lipedema.
“Lipedema is a chronic progressive disease characterized by abnormal fat distribution resulting in disproportionate, painful limbs. It almost exclusively affects women, leading to considerable disability, daily function ing impairment, and psychosocial distress. Literature shows both scarce and conflicting data regarding its prevalence. Lipedema has been considered a rare entity by several authors, though it may be a far more frequent condition than thought. Despite the clinical impact on women’s health, lipedema is in fact mostly unknown, under-diagnosed, and too often misdiagnosed with other similarly presenting diseases. Polygenic susceptibility combined with hormonal, microvascular, and lymphatic disorders may be partly responsible for its development. Furthermore, consistent information on lipedema pathophysiology is still lacking, and an etiological treatment is not yet available. Weight loss measures exhibit minimal effect on the abnormal body fat distribution, resulting in eating disorders, increased obesity risk, depression, and other psycho logical complaints. Surgical techniques, such as liposuction and excisional lipectomy, represent therapeutic options in selected cases.” – Lipedema a Call to action.
I have tried everything under the sun! I reference photos in my binder of me 100 pounds lighter than I am now in a bathing-suit that clearly show I have advanced lipedema that was unaffected by weight-loss. A picture is worth a thousand words.
“Lipedema is a loose connective tissue disease predominantly in women identified by increased nodular and fibrotic adipose tissue on the buttocks, hips and limbs that develops at times of hormone, weight and shape change including puberty, pregnancy, and menopause. Lipedema tissue may be very painful and can severely impair mobility. Non-lipedema obesity, lymphedema, venous disease, and hypermobile joints are comorbidities. Lipedema tissue is difficult to reduce by diet, exercise, or bariatric surgery” – Standard of Care for Lipedema United States
Lipedema reduction surgery is currently the only available technique for removing abnormal lipedema tissue such as adipocytes, nodules, fibrotic extracellular matrix, and other non-adipocyte components. It is also the only treatment that slows progression of lipedema and ideally would be performed before complications and disabilities from lipedema develop. – See the Standard of Care for Lipedema USA
So many of the doctors I meet have never heard of Lipedema before and as such have said things like “I couldn’t make a diagnosis… it wouldn’t be professional” or “I don’t know how to make the diagnosis”
This is a perfect opportunity to present the Standard of Care for Lipedema or the diagnostic guide from your binder.
Some of the doctors I meet eventually ask me what I “need” or how they can help. In the early stages I asked for prescriptions for custom compression garments, Manual Lymphatic massage from a qualified therapist. These are of course only covered by extended health insurance benefits at this time. In the later stages I have asked for referral letters to Manitoba health for surgical coverage, as well as confirmation of diagnosis of my lipedema.
If you are fortunate enough to find a doctor that is willing to help at all be prepared at each visit with your goals for the visit.
I am a big fan of the USA Standard of Care for lipedema as a reference document for my visits. I always leave a copy with each doctor.
I also bring copies of the WHO disease criteria and the process for benefit application for Manitoba health. I basically take the guess work out of accessing care by doing the leg work for my doctors. Bring your binder to each appointment.
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