Experience report: Decongestive therapy for primary lymphoedema

"circaid juxtafit leaves a positive mark on my leg!"

As an infant, her right leg was constantly warm and thick. At the beginning, adaptation difficulties were suspected before the doctors diagnosed primary lymphoedema in Alina Kalbus at the age of two. Today, 28 years later, she is permanently in treatment. One component is medical compression: She wears the medical adaptive compression system circaid juxtafit for decongestion and in the subsequent maintenance phase the flat knit medical compression stockings mediven mondi (both from medi). In the interview, she shares her experiences and talks about the important role played by her own environment, among other things.

Ms Kalbus, your lymphoedema was diagnosed when you were two years old. How did the first treatment take place?

"At first I had lymphatic drainage and mistakenly a round knit fitting, but as a small child I often didn’t want to wear it. Fortunately, the leg was later treated at the Földiklinik in Hinterzarten, a specialist clinic for lymphology. After that, the treatment was not as consistent until, at the age of nine, I complained of severe pain in my right leg and was fitted with a flat knit compression."

You are currently being cared for by your dermatologist, who has additional training as a lymphologist. How did it come about and what does the treatment look like?

"That was a stroke of luck: At the age of 18, I went to a new dermatologist because of my moles, who talked to me about my lymphoedema – at that time I didn't know about her additional training as a lymphologist. Since then I have been in very good hands! My treatment consists of lymphatic drainage, a lymphomat machine and circaid juxtafit* from medi for decongestion – and after the decongestion phase is complete, I use the flat knit compression stockings mediven mondi** from medi for maintenance. In addition, I currently go to rehabilitation swimming once a week, where we do exercises in the water, for example with the bike or stepper. I have to invest some time and energy, but if I let it slide once, it would show right away because I would start suffering again."

This means that the treatment components help with the decongestion and to keep your lymphoedema under control?

"Definitely! Like other sufferers, I have great problems at times and a permanent feeling of painful pressure due to the accumulation of fluid in my right leg. The combination of the circaid juxtafit* medical adaptive compression system in the decongestion phase and my flat knit compression stockings in the maintenance phase create a counterpressure that relieves my discomfort. The support from lymphatic drainage and the lymphomat also helps me a lot."

What effect does circaid have on your symptoms?

"I now wear circaid regularly during the decongestion phase, especially after lymphatic drainage or after intermittent pneumatic compression therapy with the Lymphomat – it does me a lot of good! After wearing it, I always take a photo of my leg. In some places, there are visible changes in the tissue that show how much fluid was in it and what force circaid applies during decongestion. It's fascinating!"

How do you feel about the wearing comfort?

“Very pleasant! With traditional wrapping, the compression is sometimes too tight or too loose, but with circaid I can simply open a flap and readjust the fitting myself if necessary."

This is supported by the unique pressure measurement card. How well do you get on with the so-called Built-In-Pressure System?

"I like the fact that I can see directly whether the compression pressure fits. After putting it on, I measure it with the help of the pressure measurement card and adjust the straps and Velcro fasteners of the circaid fitting if necessary. I find it both a relief and a security to know that the compression pressure fits!"

What is your conclusion about circaid?

"circaid supports me in my therapy and leaves positive traces in the decongestion – I notice that every time on my leg! I can therefore only advise every lymphoedema patient to have circaid prescribed for decongestion."

How do you rate the interaction between doctor and medical supply store in your treatment?

It is very important to have trustworthy contact persons at your side. In my current medical supply store, I am closely supervised by an expert who came to my attention via Instagram as a so-called 'Sanifee'. After the consultation with my doctor, I am measured in the medical supply store and am introduced to different colours, crystals and supportive lymph pads – compression therapy is really very versatile these days!

What role does support from family and friends play in dealing with the disease?

"An immensely important one: To this day, I have great support and understanding from those around me. Otherwise I would not be able to have such extensive treatment – also with regard to childcare. Something else has also helped me in dealing with my illness: social media."

In what way?

"I have learned even more to be self-confident and open about my illness. Through the patient community on social media, I see how many sufferers there are in Germany – it helps me to understand that I'm not alone and that I can exchange ideas with others. It's like a kind of self-healing for me! At first I kept a low profile; that changed when my subscriber numbers increased and I realised how popular my account was."

Do you have any tips for other sufferers?

"Never give up and don't get discouraged. I am a strong woman and have learned how to make my life worth living and beautiful despite my condition – I have grown from that. Also important: Self-management to get the best out of your body!"

Dear Ms Kalbus, thank you very much for your insights and the informative interview!