Have you ever thought of founding a lipedema self-help group?

The fact that we lipedema ladies are committed is nothing new. But when I ask around in my own ranks, then the word is there support group still in its infancy. I keep asking myself why that is?

We women are communicative, mostly enjoy being around people and we want to find out facts and innovations about our illness. Sure, the internet offers quick help here, but unfortunately the social factor falls by the wayside!

From my own experience I tell you: Self-help rocks!

lipoedem mode self-help group found melanie advanced training at the 2016 DGL conference in Hof
Further training at the DGL conference 2016 in Hof

Three years ago I dared to found a group in Munich and now we have become a real family that meets once a month to exchange ideas. About medical care, therapy options, nutrition, sport and of course about personal experience. You get to know other affected people up close and ideally you also meet privately. We have created so many great friendships as a result.

Starting a lipedema support group is really not difficult at all

I'll be happy to give you a few tips and show you how easy it can be:

  • Research for the responsible body for self-help
    As a rule, there is a self-help center (SHZ) in every large city and in smaller cities / districts / municipalities there is always a district office that you can turn to. Another alternative is direct contact with a local health insurance company. Make an appointment and describe your project, it looks authentic!
  • Find a location
    The SHZ, district offices and municipalities support you in finding a suitable location, which is usually even made available free of charge. If this is not possible for certain reasons, a local café may offer the opportunity to meet up to start with.
  • Elaboration of marketing
    Self-help can present itself! Regardless of whether it is online, on a flyer or through simple stories from other people affected.
  • Plan the founding meeting
    In order for those affected to join forces, the lipedema self-help group must of course be founded in an initial meeting. It takes four people who are themselves affected by the disease. Announces the founding meeting, for example, in a local newspaper with place and date. This is how people become aware! On top of that, it would be ideal if a resident doctor (phlebologist, dermatologist or even a family doctor who knows his way around) were willing to give a lecture on the subject.

    lipoedem mode self-help group set up melanie decongestion exercises in the group
    Decongestion exercises in the group
  • What many do not know: Self-help groups are financially supported by the health insurance companies
    You can apply for this once a year. The responsible offices, which I mentioned earlier, also take care of the entire process. For example, costs for room rental (if there is no free option), specialist literature, office supplies, speaker fees can be applied for and advanced training courses (lipedema day, lymph day, specialist events) are also funded. The prerequisite for this is that the line is through none Specialist takes place. So there is no financial support if a doctor, therapist or provider leads the group!

The most important thing: it's fun!

I think that was the first important information about founding a lipedema self-help group. Let that work for now and think about whether that might be something for you too! It is really fun to do an honorary position and the gratitude of other affected people really motivates to stay on the ball. And it also drives our greatest concern forward: we make LIPEDEM better known!


lipoedem mode found a self-help group melanie How do I bandage myself?
How do I bandage myself?
lipoedem mode self-help group found melanie fashion show in Kompression at Ulla Popken
Fashion show in compression at Ulla Popken


lipoedem fashion melanie nurtsch

Author: Melli

Hello everyone, I'm Melanie, born in 1985 and live in beautiful Munich. I have been the proud mum of a cute daughter since 2017 and from then on my life became even more colorful. I was diagnosed with lipedema completely unexpectedly in 2011 - a real relief for me. I've been wearing my flat-knit compression with love for six years now, because it can be combined very well with fashion and is always an eye-catcher. I also deal a lot with the topics of nutrition, exercise, self-help and compliance - because lipedema requires holistic treatment. You just have to remember to live anyway and this is exactly the combination that concerns me!

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  • Thank you very much, you wrote that really well 🙂 and the more we do something and educate people or get them out of their hiding places, the better! Each of us has the right to get out of isolation and is allowed to wear compression !! It must. If only all medical supply stores were ready 🙁 I got 8 through before I was properly taken care of. So many, many thanks.

  • I have thought about founding one so often because there are really few offers in my area that don't take you almost 2 hours to drive ...

    But I'm too scared because, despite lipedema in most of the eyes, I'm quite slim. I was afraid that I would not be accepted or rebuked because it is not that bad for me yet. (That I still have pain is unfortunately often overlooked).

    And now it's already too late because I'm moving in 2 months ... But maybe there is already a group that I can join and maybe even be welcomed very well.

  • Thanks for the great article,
    I am currently in the process of forming a group and during the week I also have an appointment with a self-help center here on site.
    Unfortunately we don't have a group, so I set myself the task of doing one 😉
    The post here helped me a lot and it was the first thing that gave me this idea.

    Thank you 😉