This disease causes an abnormal and painful accumulation of fat, especially in the legs. It affects nearly one in ten women but remains little known to the medical profession. Claire, a 32-year-old from Var, testifies to more than ten years of medical wandering in order to have her pain recognized.
“Before being diagnosed, I believed for a long time that my body was not functioning as it should“. The ordeal of Claire Fourneaux, 32 years old and resident of Sanary-sur-Mer, lasted more than ten years.
Diagnosed five years ago with lipedema, this disease, most of the time genetic, is characterized by an accumulation of fat under the skin in the legs or arms. While it may be painless, lipedema can also manifest itself with symptoms such as the presence of bumps under the skin, pain, a feeling of heaviness in the legs or the sudden appearance of bruising.
For Claire, it all started at the age of 15, in the middle of adolescence. The young woman complains constantly “electric shocks in the legs, fat that accumulates without sport or diet being able to do anything about it and difficulty dressing for pants and boots. Alerted by the symptoms, she decided to consult a doctor at the hospital with her mother. Without success.
For twelve years, the medical wandering lasted: “I was told to lose weight or exercise but I did and it had no impact. Some doctors even started to make me doubt the pain“, says Claire. An exclusively female disease, lipedema remains underdiagnosed. While it affects 11% of women, according to Health Insurance figures, it is still confused with excess weight or water retention. “There was clearly a form of contempt on the part of the medical profession who preferred to doubt me than admit their ignorance on the subject. “, explains Claire.
For Claire, the manifestations of lipedema were not only physical: “I suffered from this medical wandering which denied my pain. You also have to tolerate the gaze of others, especially when you become a woman.“. Commonly called pole leg disease, lipedema gives a visual impression of bulky legs.
For Claire, liberation came at the age of 27 when she watched a report discussing the illness. She then managed to be diagnosed by an angiologist. There is no cure for lipedema yet. The operations, rare but existing, are not reimbursed because they are considered cosmetic surgery. The majority of patients head to Belgium or Germany, two countries more advanced on the subject. To the great dismay of Claire who regrets “a clear delay on the part of France“. She decides to have surgery, twice, in Belgium for the expensive sum of 10,000 euros. And the costs don’t stop there: “compression tights cost 300 euros and the price of lymphatic drainage which is recommended amounts to around a hundred euros per session“.
A patient-expert graduated from the University of Nice, Claire now puts her knowledge at the service of women affected by lipedema. She is the creator of the directory “Lipoedema en Claire” which brings together all health professionals who know and treat the disease and of a book “Once upon a time… my lipoedema“She is also the initiative.”meetings between women and support groups for the disease“, she lists. Her goal? That no woman finds herself alone facing lipedema.