Experience report: Compression for men with primary lymphoedema

In Jürgen Jakob's case, symptoms of lymphoedema first appeared during puberty. In the interview, he reports that he did not like wearing compression stockings in the past. Today, he no longer lets his lymphoedema determine his life and deals with it openly.

Experience report: Jürgen Jakob

"Compression can be so versatile – also for male lymphoedema sufferers!"

"I still remember well that my father used to wear compression stockings and raise his legs," says 58-year-old Jürgen Jakob, who probably inherited his lymphoedema in both legs from his father. Wearing medical compression stockings in his youth is not something he likes to think back on. Today, Jürgen Jakob is more open about compression – and also shows his true colours, most recently as one of the faces of medi's new trend colour campaign.

Mr Jakob, please give us a brief insight: When did your primary lymphoedema first appear?

“During puberty – I can still remember it clearly, because I was on holiday at my grandma's farm, I felt listless one summer day and got a high fever and chills. A short time later, both legs were fiery red, hot and swollen with fluid from the knee upwards. The local country doctor was not a specialist – after that I started my 'journey' to different doctors until I was diagnosed with primary lymphoedema in 1977. That was a big shock for me and I didn't want to accept it at first."

How is your condition treated today?

"Top priority: Compression – immediately after getting up until late in the evening. At the beginning I wore compression class 2 – but that wasn't enough and now I wear class 3. I go to lymphatic drainage twice a week and swim regularly. In between, I also use the Lymphomat (a home device that mimics lymphatic drainage). Due to an accident at work, my condition had worsened, which is why rehab stays have been part of my treatment at certain intervals ever since – it's a holiday for my legs! Here I wear a wrap bandage from morning to night, do a lot of movement and take advantage of the many different exercise options such as Zumba, Nordic walking and others. Exercise is also important for me in everyday life to lose weight, because being overweight can make lymphoedema worse."

What was it like for you to wear medical compression stockings during puberty?

“To be honest: terrible! Especially the sports and swimming lessons, where you could see my legs, were psychologically very stressful. I had to endure a lot of teasing as a result: I withdrew more and more. Then, when I was 16, I went to the Feldbergklinik, a lymph clinic in the Black Forest, where I was treated for several months!"

How has your lymphoedema developed since then?

"Since it is a chronic, progressive disease, it is important to maintain the status quo as much as possible. For me, it is a success if there is no deterioration. However I often get stress-related erysipelas – a bacterial infection of the upper layer of skin and superficial lymph vessels. Either one or both legs become red and hot, with chills, fever, swollen and painful lymph nodes in the groin and enormous fatigue. The consequence: Bed rest, penicillin tablets and an immediate stop to lymphatic drainage so that the inflammation cannot spread through the body. By the way, erysipelas can also be caused by wounds, for example a mosquito bite or cracks in the skin – optimal skin care is therefore particularly important."

Has your approach to the condition changed?

"Yes! Today I no longer let my lymphoedema determine my life and have, for example, travelled a lot in recent years – to my dream destinations Thailand, China or the Philippines. Warm countries by the sea are my passion. Even if you have lymphoedema, you should avoid warm temperatures as much as possible. So I always make sure to cover my legs. My tip for warm days: Cold showers to relieve swelling or medi fresh as a freshen-up in between – I leave the medical compression stockings on!"

Do you still notice restrictions in everyday life?

"Yes, several actually – I am not as productive, both in sports and in everyday life. I find it difficult to stand or walk for long periods of time. What helps me: Breaks, being aware of my body and treating it well. I also work full time and try to achieve the same level of performance as my colleagues. It's just that my morning routine probably starts differently: After showering, I immediately put on my compression class 3 knee stockings. Following a car accident in 2011, my lymphoedema spread further over my kneecap and into my thigh; since then I've been wearing an extra cuff (compression leg piece) to put over it."

You wear mediven 550* from medi – what do you particularly like about it?

"The material fits tightly, but still feels light. This is especially important for me because I have shoe size 46 ½, so every millimetre counts when buying shoes in order to find something that fits. The material must withstand a lot, but not constrict or encourage sweaty feet. The mediven products from medi have won me over with their wearing comfort and high quality, which is why I like wearing them very much. I also like the variety of colours and patterns and it makes my life easier!"

You are one of the faces of the current trend colour campaign - what motivated you to take part?

"I would like to raise public awareness of lymphoedema – and find like-minded people to exchange ideas with. Affected men in particular are sometimes still reluctant to come forward. As part of the medi campaign, I want to show them what possibilities are open to us with the diverse colours and patterns!"

Will you tell us your current favourite colours and patterns?

"Of course! I am already looking forward to the new brown shade chestnut. Otherwise, I like to wear dark tones like black or dark blue, but lighter, cheerful colours also cheer up my everyday life. The different patterns like stripes, dots or nature look classy and individualise your own outfit. It’s really great that medi offers such a wide range!"

You were diagnosed over 45 years ago: What has changed in the way lymphoedema is treated since then, especially in men?

"I try to make contact with other men with the condition during rehab stays. It strikes me that only a few people deal with the condition as intensively as I do. The topic of medical compression stockings is often kept quiet among men. I don't understand that, because the stockings have become so modern now. With their many colours and variations, they offer great options that make it easy for me to combine fashion with my chronic illness, even as a man. The motto is: Show your true colours. Even the medi golden oldie 'magenta' is a real eye-catcher as a strip of colour between the trouser leg and a business shoe – not only for women!"

And what about shorts and medical compression in summer?

"I'm honestly finding this difficult so far. I still can't manage to wear shorts or Bermuda shorts and sometimes wish I had 'normal legs' at this time. Even though I am very open about my lymphoedema for the most part, it is a long process! Many affected women are already a confident step further – I admire that! That's why it's very important for me to exchange information and learn how other people deal with the disease and the care they receive."

Is exchanging experiences also a tip for other (male) lymphoedema patients?

"Definitely! Communication helps to share experiences. It is not always easy to accept the illness – a trustful expert discussion with a doctor or psychotherapist can also help. Another tip: Make use of rehabilitation offers or support in the workplace. But it is very important to be at peace with yourself and to continue to see the beauty in life!"

Thank you very much Mr Jakob for your open and friendly interview!



*Intended purpose:

mediven® 550 leg:
Leg compression piece: Flat-knitted medical compression garment used for compression of the lower extremities, mainly for the treatment of disorders of the lymphatic system.