How did you find out about the disease?

Hi, my name is Janina (Liavia 86).

I am 36 years old, happily married since 2016 and work full-time in NRW (North Rhine-Westphalia) as a bank clerk.

At that time, I was often told by the family “You look like Grandma Hedti”.

This statement was related to my bodily proportions following puberty.

At that time, I could not make the connection with the chronic disease lipedema.

I only found out in 2019 of the existence of the disease lipedema, a painful fat distribution disorder that usually affects women and unfortunately is little researched to date.

When I learned about the disease and the typical symptoms through the media in 2019, I looked back on my life and the transformation of my body.

I started playing football when I was 3. I was an active and successful football player for over 20 years. Besides that, I practised other sports such as judo, field hockey, table tennis, dancing. Therefore, I partially completed 4 to 6 exercise units per week. However, my physical appearance unfortunately did not reflect this ambition and training.

Since I did not eat much differently than my girlfriends, I started dieting early to become like them. At 16, I accompanied my mother to the Weightwatchers group meeting, followed by diets like the cabbage soup diet, globule diets, low/no carb etc.! I lost weight in the short term, but could never keep it off for years.

The pain and volume increases unfortunately followed as time went on. I used to be able to wear boots and suddenly I ended up at the doctor with a suspected thrombosis, as my legs became swollen within a very short time and bruises increased. However, at that time, a thrombosis was not confirmed, nor did they point out a disease such as lipedema. I probably had a surge, unfortunately these surges are a bitter reality for lipedema sufferers.

In 2019, I had such severe pain in the calves and legs that I consulted a specialist after the emergence of media reports, driven by the politician Mr. Spahn.

Unfortunately, this visit was not helpful, except for the diagnosis of lipedema stage II.

Terms such as flat knit garments, manual lymphatic drainage, rehabilitation for lipedema and self-management were not mentioned in any way.

I was sent home with a prescription for circular knit knee socks. There was also a friendly hint: You can be happy to have such a pretty face, your husband and your safe job.

Thanks for nothing!

Unfortunately, I actually buried my head in the sand at that point. In order to prevent other women who are diagnosed with lipedema from making the same mistakes, I have had a very specific goal since September 2021.

I want to enjoy my life with the disease to the fullest. The announcement and education are now a matter of the heart for me.

I would like to briefly describe how I was able to achieve this surge of strength and ambition.

In September 2021, I was in Cologne at the first LipedemaBarcamp and was able to get into direct contact with affected women for the first time.

This event completely changed my life and mindset at that time. I would describe it as a kind of life 2.0!

In conclusion, I can proudly report that I have been wearing a flat knit compression garment on my legs every day since September 2021 and even on my arms/hands since December 2021. I go to manual lymphatic drainage twice a week and also use my lymphomata, which I received from the health insurance.

In July 2022 I was at a rehabilitation centre in Bad Berleburg.

I regularly attend events on the topic of lipedema and actually set up my own first lipedema event on 22 October 2022 with the support of an exercise centre in Ennepetal.

Through my social media engagement, Instagram, I now post daily input on the topic of lipedema, self-management, fashion with compressions and exercise with chronic disease.

I love to present my creative and positive manner there.

The last year has shown me that it is good to be officially diagnosed, to know that you are not alone, but among many women who have a chronic painful fat distribution disorder.

For me, it is a chance to reorganise my life, to focus on my health, but first and foremost to live with the disease and not to fight it.

I can only lose the fight, as it is a hormonal chronic disease. There can always be surges or changes. I also have comorbidities such as Hashimoto’s theodr, hypothyroidism and leaky gut.

My message to you is not to judge women based on their body shape, every 10th woman in Germany is probably affected by lipedema, many of them have gone through years of hardship.

And my message to the women who are in a similar situation as I am, be open about the disease, inform and educate your fellow humans.

Let’s work together to educate and publicise. Bettertogether

Hi, my name is Janina

My body is not a piece of jewelry, but an instrument. I have lipedema St II in my arms and legs. In the meantime, I know how to accept myself and enjoy my life with the diagnosis. The announcement and education of the disease are a matter close to my heart.

My Instagram profile


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