In Germany, over three million women suffer from lipedema. Fate struck three times in a family from Schleswig-Holstein. All three sisters suffer from the pathological disorder of fat distribution. In an interview with Marians Welt, Madeleine, the oldest of them, tells how she and her sisters are struggling – with the disease and the health insurance companies.
You can’t miss how close you are Madeleine (24), Diandra (23) and Cheyenne (21) are standing. The three sisters from northern Schleswig-Holstein not only share family roots, but also a difficult fate: all three suffer from lipedema.
They are far from alone in this. According to expert estimates, suffers Around every tenth woman in Germany has a fat distribution disorder, in which the fat cells, especially on the legs, buttocks and arms, multiply and enlarge unchecked. That means for those affected Water retention, bruising, and tenderness so severe that even a small touch causes unimaginable pain.
It’s the same with Madeleine. “A friend recently tapped me on the arm as a greeting. I almost screamed in pain,” recalls the 24-year-old. The nurses can only cope with their everyday lives with the help of compression stockings. The pain remains anyway. “Every movement is restricted. In the evening, the legs feel as if they were poured with concrete,” says Madeleine, describing her daily suffering.
The disease is most pronounced among civil servants. In contrast to her younger sisters, she was already overweight as a child. When she was a teenager, she realized that she was not just fat, but sick. “It was as if all my excess weight had slumped into my legs. Upper and lower body just didn’t fit together anymore,” recalls the 24-year-old. Cheyenne, who was three years her junior, showed a similar picture.
“She tortured herself with diets”
The sisters began to research and finally drove secretly to a phlebologist in Kiel. The expert confirmed their premonition. Both suffer from stage two lipedema. That was in 2015. In the family council they revealed the disease and learned that almost all women suffer from the disease on both the maternal and paternal side. But only a few of them fight against it. It was the same with Diandra back then. “For a long time we didn’t want to admit that she had it too, and she was so slim that hardly anything could be seen,” says Madeleine.
But although the now 23-year-old did everything to keep her slim figure, it should not stay that way. “She tormented herself with diets and did a lot of sport, but her legs got stronger and stronger,” says Madeleine. In the summer of last year, the third finally received the diagnosis of lipedema, stage one.
Although the disease was the least severe in her, it was immediately clear to Diandra: she wanted to have an operation – a possibility that her sisters had not even considered before. “It was clear to us that we couldn’t afford that anyway,” explains Madeleine.
It would cost a total of 66,000 euros to free all three of their suffering. Madeleine and Cheyenne require four interventions. Diandra would have to go under the knife three times. Cost per operation: 5,995 euros. The health insurances rejected all applications for reimbursement.
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Thanks to a fundraising campaign, they want to repay debts
They would only pay from level three, the most difficult level. But waiting until the disease has reached this stage is out of the question for the sisters. “At this stage a normal life is no longer possible. Many women even sit in wheelchairs. That is inconceivable for us at our young age,” says Madeleine.
To finance the operations, they set up a special account at their bank with an appropriate credit line. One thing is certain for the brave sisters: They want to repay their debts as quickly as possible. A fundraising campaign is supposed to help. The three of them ask for financial support on their Instagram and Facebook accounts. 6,800 euros have already been raised in this way. It is divided quite fairly by three.
Cheyenne has already had the first surgery. In October last year, 6.2 liters of the abnormal fat were sucked out from the front of her thighs. The operation on the back of the thighs follows on February 26th. Diandra was also under the knife for the first time. Since January 14th, she has had to carry 3.4 liters less in her lower legs.
Lose 25 kilos until liposuction
The sisters document their operations and the healing process on social media. The “lipoedem_schwestern” now have over 1,600 followers on Instagram. Almost 1,000 users have theirs Facebook site subscribed. Many of them are other victims who appreciate the sisters’ honest and open approach to their illness. “We get messages every day from women who write that we have given them the courage to face the disease. That is wonderful. It also gives us a lot of strength to face lipedema together,” says Madeleine.
It will take a while before she can finally proudly post surgical pictures. “The doctor says I have to lose 25 pounds before liposuction can be performed,” she explains. The 24-year-old wants to get rid of her excess weight with a consistent change in diet and a tight sports program. Five kilos have been down since the beginning of the year. The remaining pounds should drop as quickly as possible. “I hope that I can do the first operation in the spring,” says Madeleine.
As strong and brave as the three sisters fight, Madeleine will also achieve this goal. Her sisters will support her in this – and certainly also the many women for whom Madeleine, Cheyenne and Diandra are great role models.