Lipedema: No cure without research into the cause

What has moved me lately ...

The contribution to Stern TV hit like a bomb. Here you can find the post again. Many women have realized that they are ill, and many new women have joined the social media groups “lipedema”. Many open questions and only a few answers awaited you.

On the one hand, it is good that we educate people that things are moving forward and that more people find out what is really wrong with those big legs. More than fat, too much food and no exercise. Prejudices are finally taking the wind out of the sails.

But I wonder if so many women are suffering, why can no one name the cause yet? Wouldn't that be the whole point? Unfortunately, despite everything, we are a fringe group for which it is not worth researching. The pharmaceutical industry is not going to get rich off us - that is the point. Sad but true, you can tell here: Money rules the world!

There is no cure without research into the cause

Many women have now been operated on. Is liposuction the holy grail? How many women are really well after that? Physically and physically. You only hear a few voices speaking of "I am healed". But lipedema is chronic. It can come and do whatever it wants as long as the cause is not clear. Say, nobody is cured. Where are the women who still have problems after the operation? We need to talk about it more, we must not maintain illusions. No cure without root cause research, right?

Talking, exchanging, recognizing, sticking together.

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What has moved you lately? What are you surprised or happy about? Share your thoughts with us.

Handwriting Anja

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Author: annichen1989

I'm Anja and I was born on February 10.02.1989th, 2 in Schwedt an der Oder. So I come from beautiful Brandenburg. Professionally, I work as an office communication clerk, I support XNUMX companies with my workforce. I also work as an artist in the field of manga. Dear Caroline invited me to participate in this blog. I enjoy sharing my thoughts and I hope that this will also make our disease better known.

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  • No cure without research into the cause - I see it exactly the same way and have long thought that we should fight a lot more for research into the cause than for the operation! The contribution in Stern TV was definitely one of the best and most realistic that has been shown so far. I thought it was really great - the illness was explained correctly and understandably for outsiders!

  • I'm Nicole, 43 years old.
    I was diagnosed with lipedema in 2013. Type III stage 1.
    I am also of the opinion that much more should be done for people with lipedema, but I have to say that the article worried me at Stern TV and that the illness has accompanied me psychologically since then, day and night. Before the post, I had a relatively “head free life” from this disease. I also don't think that every woman with strong thighs and a slim torso suffers from lipedema. Nevertheless, I would also like to see more done for us who are affected.

  • Hi Anja,

    you speak to me from the bottom of my heart - lipedema therapy always seems to be about damage limitation.

    Briefly to me: I am 37 and am currently level II, legs whole and arms whole.

    Five years ago I had four liposuctions, some of the costs of which were covered by the health insurance after a tough battle. On the one hand, they helped me get my lipedema under control better, on the other hand, other problems increased. Now the poor are worse off and the lymphologist (from the Földi) only says: get suctioned. This can not be it! It MUST not be that not even specialists have approaches to therapy that do not result in surgery. As a person affected, you are condemned to look for the latest treatment approaches from Internet forums and then, if you have luck, see if it helps, and only if you have the financial resources - I am overcome with helpless anger.

    In my case, I decided to try Endermologie first. This has probably successfully improved the lymph flow in lipedema and increased the elasticity of the skin. I've only had two sessions so far, but I'm cautiously optimistic. Furthermore, there are various approaches that the inflammation in the tissue caused by lipedema can be improved with high-dose vitamins and trace elements, which in turn leads to a better metabolism. But there is no broad consensus on WHAT and what dosage it has to be taken. So it's back to self-testing. If so many women are affected globally, why are there no studies that question different approaches?

    Liebe Grüsse,
    Karin

  • Dear Anja,

    I can understand these lines of thought well. But I believe that the pharmaceutical industry / doctors make a really good profit from us. Therefore no research into the causes is carried out.

    On the one hand the conservative method: the Kompri is extremely expensive. In addition, those of us who can afford it sometimes pay for care outside of the health insurance themselves. So a profitable business for the sanitary facilities. The physiotherapists also earn enough money at the MLD, whether with health insurance or as a private patient when the health insurance goes wrong again. So no one will come up with the idea of ​​finding another method that would make the Kompri or MLD unnecessary.

    About liposuction: Lipedema patients are a blessing for the operating doctors. Since the health insurers almost never cover the costs, there are many who suffer from the disease so much that they scrape everything together to have an operation. Jackpot: private patient. Doctors therefore have no incentive to investigate the cause, as one deserves good money from it. When I read how often lipedema patients have surgery, it's a profitable business. Don't get me wrong, I'm not blaming the doctors, but the incentive system to investigate the cause is simply missing.

    I am generally a very big critic of our health system. Not just with lipedema. But since I got this diagnosis, there have been even more criticisms. I think the health insurances are setting the wrong incentives. Because they only cover the costs of the lipusection in the rarest of cases, almost no studies on the effectiveness of the method are made. What rumgeist here as experience reports on the Internet are individual, subjective feelings. You can neither check the authenticity, nor do you get an objective picture, since you can see the findings ect. does not know at all and therefore z. B. cannot rule out interactions with other diseases. That is why I have so far resisted this method. Surely a surgeon will always advise me to have an operation, because it is how he earns his money.

    It's just a vicious circle that makes me so dissatisfied at the moment. I make a substantial contribution to social security every month and what you get back when you need help and are willing to do something is next to nothing. Two compresses are just not enough if I wear them every day. Others have compression stockings made (whenever an application can be approved) and do not wear them. But when I apply for a third supply, I don't even get a grant. It's not about getting a flat rate for Kompris, but a reward from the health insurances, for which I wear it regularly and integrate it into everyday life, would be nice (and if it is only half).

    A fellow sufferer and namesake
    Anja

    • Hello dear women and fellow sufferers, I am 26 years old and also suffer from lipedema. I have tried many alternatives and have not yet given up hope of a cure. My latest finding, Ayurvedic nutrition. I have my appointment with the specialist tomorrow. Protein-free nutrition has helped me a bit, but hopefully that should bring relief now. Above all, a healthy and motivated spirit behind it. I am perhaps a hopeless optimist and hopeless, hopeful. Still, I firmly believe that there is no such thing as illness. Only our soul cries. They want to tell us something. We just have to recognize it and we will !!! Without doctors ..! We fight for ourselves. We are lost when we seek our happiness outside. There is a way. I am sure.