Hereditary lymphoedema: a testimonial on experience on the condition and therapy with circaid® juxtafit® and mediven 550

Decongestion and maintenance in hereditary lymphoedema: interview with patient Marianne Heitkamp

After a car accident in October 1990, Marianne Heitkamp first developed lymphoedema: initially only in her legs, but later also in her arms. Only later it was discovered that she suffers from hereditary (inherited or primary) lymphoedema, which only became apparent and diagnosed after the accident. Since then, the 64-year-old has followed a treatment programme consisting of manual lymphatic drainage, lots of exercise and compression. For decongestion, she wears the adjustable compression device circaid juxtafit and in the maintenance phase the flat-knit medical compression stocking mediven 550 (both from medi). In an interview with her physiotherapist Tina Keienburg, she explains why interaction between patient and therapist is crucial to success – and why it took almost a year for her to be diagnosed with lymphoedema.

Ms Heitkamp, you have primary lymphoedema - when was the diagnosis first made?

“That was in August 1991, almost a year after my car accident: An elderly gentleman hit my stationary car with his vehicle. I was thrown out of the vehicle and my foot got caught on the driver’s door. Among other things, this severely damaged my lymphatic vessels. There was slight swelling in my left leg. My lymph vessels are weaker than in healthy people anyway because I have a hereditary predisposition. My mother and my aunt used to have very swollen legs, but they were never diagnosed with the condition as such. This congenital weakness of my lymphatic system, the primary lymphoedema, only came to light after the accident. I also have secondary lymphoedema on my right leg because the lymphatic vessels were injured here. After my wounds had healed, the lymphatic fluid could no longer be drained efficiently due to the damaged lymphatic system.”

Why did it take almost a year for you to be diagnosed with hereditary lymphoedema?

How has your hereditary lymphoedema been treated since then? Which experiences did you gain?

“I went to the clinic every year for inpatient decongestion, initially at the Földi Clinic, later with Dr Schingale at the Lympho Opt Clinic. During my second stay, the lymphoedema had already spread from my lower legs to my thighs and a year later both my arms were also affected. Since then, I have been to the clinic 27 times for inpatient decongestion and four times as an outpatient due to the Covid-19 pandemic. After the treatments, I’m almost always pain-free and more mobile. However, the rest of the time it is up to me to actively influence my condition and to shape my everyday life in a self-determined way. This requires a high degree of initiative and knowledge about the condition. It is also important to have a good network of therapists and doctors.”

Was it difficult to get expert care?

When choosing a suitable physiotherapy practice, what is important to you beyond the professional?

“The chemistry has to be right! After all, you go to lymphatic drainage twice a week and have to undress in front of a stranger. That's an obstacle to overcome at first, especially if you're not completely satisfied with your body shape. It's also important that the therapist takes time to answer questions, but also recognises if, for example, the lymph nodes in the neck-head area are swollen - and treats these separately.”

Ms Keienburg, you have been Marianne Heitkamp's treating physiotherapist since 2019 - in your experience, what are the key therapy components for lymphoedema patients?

“The most important components for those affected are their own motivation, willpower and awareness of the condition. Without discipline and cooperation, the best therapy and most effective medical compression will not help. We as physiotherapists have an advisory function beyond pure manual lymph drainage. We provide information, give tips on skin care or behaviour in everyday life and support patients in the social-emotional area, for example, if they are having a bad day. Our work is more comprehensive than one might think.”

What do you particularly like about mediven 550?

The knitted fabric is firm and stable, but comfortable to wear. I particularly like the individual additions such as the hallux relief zone or the integrated functional zones for even more wearing comfort. Good advice from the specialist in the medical supply store is worth its weight in gold! And I personally like the crystal motifs very much. It's important to feel comfortable and confident in your compression.”

Since last year, you have been using the adjustable compression device circaid juxtafit on arms and legs for decongestive therapy - what was your first impression?

"Honestly, I was a bit sceptical. I couldn't imagine that the pressure could be applied exactly as required. But my physiotherapist Tina Keienburg and I have been proven wrong! circaid is more timesaving than conventional compression bandages and does not slip during the day. My therapist's experience makes it easier for her to apply my circaid. However, good instruction by a specialist in the medical supply store is essential - after that, the application only requires a little practice and skill."

Images: © Marianne Heitkamp, photographer: Janina Benner

Ms Keienburg, can you confirm this for the decongestion phase with Ms Heitkamp?

“Yes, definitely! Compression bandaging can be a strain for therapists as well as for patients. It took us at least an hour to bandage both of Marianne Heitkamp's legs, plus the arms. Not forgetting: The patient has to take off the bandages every evening and labouriously roll them up again. After two weeks we were down to just 20 minutes to apply all of the circaid garments on Ms Heitkamp’s arms and legs. The result was impressive: Ms Heitkamp lost almost four kilos of weight within 14 days and her circumferences were reduced by up to 2 cm. Overall, it is a very well-designed system and the optimal alternative in decongestive therapy.”

Have there been any other positive effects, Ms Heitkamp?

“circaid is incredibly light and comfortable to wear - I can wear it under my normal clothes and it is not noticeable. I am much more mobile than I was in compression bandaging and can do sports with it effortlessly. Nothing slips or constricts. This also has a positive psychological effect on me too. And with the unique pressure measurement card, I can instantly check whether that the correct compression pressure ist applied – and readjust the bands if necessary. One evening I forgot to take off the circaid and only noticed it when I wanted to go to bed.”

You have been the first chairperson of the lymph self-help group North Münsterland since 2008 - how much does the exchange help those affected?

“It is very difficult to deal with the diagnosis at first - you have the feeling that everyone is staring at you because of your appearance. Talking to other affected people in a protected environment and coming to terms with the condition helps a lot! We provide information, educate people and put them in touch with each other. Joint activities such as lymph yoga or workshops on sports, nutrition and medical compression also strengthen self-confidence and conveys a sense of belonging. No one is alone with their condition. We don't let ourselves be discouraged by setbacks, but enjoy our lives strengthened and with increasing self-confidence!”

Ms Heitkamp, Ms Keienburg, thank you very much for your open words and the exchange on this important topic!