“My biggest fear as a teenager was going shopping, especially shoe stores. My legs had swelled up. I could stay for hours in front of the shelves knowing that I wouldn’t go into any of them. In any case, not the feminine shoes that I wanted”, testifies to 20 minutes Delphine Watieaux. The referent of the Alsace Lorraine delegation of the Association living better with lymphedema (AVML) suffers from this disease, which is even rarer when it comes to primary lymphedema in the legs.
“During my puberty, my toes, my calves, my legs swelled, depending on the ambient heat and the clothes I wore, it rots life, says Delphine Watieaux again. I love the sea and the sun, but when I go to the beach, people look at me as if to say what is this alien who comes to the beach with such big legs”. Added to this feeling of being judged is the guilt of being different, crying alone, the need to hide, fatigue… And with the years comes “above all the suffering, that of not understanding why”.
“A 25-year medical wandering”
“I lived a medical wandering of twenty-five years, adds Delphine Watieaux. I was told each time that I had to lose weight, eat better, and raise my legs because I had a vein problem! “. After a first pregnancy, things get complicated for the young mother. Her legs swell significantly and even more after a cancer against which Delphine fights a few years later. The same diagnosis falls, consultation after consultation. Until that taken at a Lorraine vascular angiologist. The latter poses the ailments: primary lymphedema in the lower limbs, i.e. a malformation of the lymphatic system which occurs at any age, during the events of life.
If Delphine Watieaux is testifying today, it is to “bring this disease to light”: “people can identify with my case and this pathology, the sooner you take it in hand, the sooner you can stabilize it and prevent the lymph to stagnate in the tissues and make fat. »
“A big arm after breast cancer”
Knowing what we are suffering from is already a great step forward. Knowing if there is a solution and what to do is better. If AVML provides advice and allows you not to remain alone in the face of the disease, there are also two lymphology reference centers in France. HAS Montpellier, at the Saint-Éloi hospital And especially in Ile de France at the CHU Cognacq-Jay, a lymphology center that exclusively treats lymphedema. “There are two kinds of lymphedema,” says Dr. Stéphane Vignes, head of the lymphology department at CHU Cognacq-Jay. Primary lymphedema which is a constitutional anomaly, at birth, and which is revealed during childhood, adolescence, and secondary lymphedema. The most frequent in France, that is to say 80%, of the lymphoedemas follow the post-treatment of a cancer. Usually a big arm after breast cancer, big legs after gynecological cancer. It always affects the legs, in men after treatment for prostate cancer. »
“Primary lymphedema is considered a rare disease, while secondary is not,” adds Stéphane Vignes. A difference that is important, because secondary school is fully covered by Social Security. Primary lymphedema is not “recognized and therefore does not give the right to long-term sick leave”, regrets Delphine Watieaux: “which is not without financial consequences, especially since bandages, sleeves, to several hundred euros and which must be renewed regularly, remain the responsibility of the patient. »
According to Dr. Stéphane Vignes, it is difficult to know the number of patients who suffer from primary lymphedema of the legs in France: “it would be around 20,000 to 30,000 people. This is a very personal estimate because there is no work that clearly allows us to have a frequency and a number of people affected. In addition, there are very small forms for which people do not necessarily consult. »
Lifelong treatment
A rarity which partly explains why more than ten patients on average arrive at the reference lymphology center “after the appearance of the first clinical signs of lymphedema”. “People don’t know, patients don’t know who to contact, where to go. The fact remains that once they are in the circuit, it goes quickly, they go to the skills centers, where the diagnosis is confirmed and the care is taken, ”says Stéphane Vignes who also advises to contact a “vascular doctor”.
Follow the treatment, which heals but does not cure. It will reduce “this big leg or this big arm” and it will be necessary to know, always according to the doctor, “to be autonomous in the care, and to accept not to be embarrassed by the lymphedema in its desires, its life projects in spite of the treatment which is binding”. Between two-week hospitalization, compression stockings, special bandages and lifelong treatment, “it is possible to reduce the average volume of the affected limb by 30 to 40%”. “We will have to continue to put on compression stockings to stabilize the volume that we have reduced, to exercise under compression, massages, otherwise it will start again, specifies Doctor Vignes. The cornerstone of the treatment is therapeutic education: we teach patients, and even those around them, the techniques of treatment or bandages that they can do at home. It’s restrictive, but it works. »
Moreover, walking no longer frightens Delphine Watieaux, who recently made part of the Camino de Compostela “to accept herself with this disease, realize her abilities and raise public awareness of this rare pathology. »