Insights into living with lymphoedema – from the diagnosis and the course of the disease to the treatment of lymphoedema
Kirsten Schade is a lymphoedema patient – and has been since the moment she was born. In this interview, she shares insights with us into her life with the disease: from the diagnosis and her treatment to the course of the disease.
When were you first diagnosed with lymphoedema?
"Diagnostics in the early 60s and 70s wasn't as highly developed as it is today, which is why I was not diagnosed until 1985, at the age of 24. I have unilateral primary congenital lymphoedema. That means that my lymphoedema is congenital. Besides my right leg, my abdomen and genitals are also affected by my lymphoedema. The cause is hypoplasia of the lymph vessels on the right side of my pelvis. This means that I either have too few lymph vessels or those I have are too narrow. I consulted many doctors before the diagnosis was finally made".
What symptoms did you have?
"Up until the diagnosis, I mainly had pain in my right calf due to the tension in the taut skin. And I always felt sick after eating fatty foods, because the lymphoedema also affects my digestive tract. This caused vomiting and diarrhoea".
What course is your illness taking?
"The report from the Földiklinik in Hinterzarten on the course of my disease shows that it is progressing. Initially, the swelling of my right leg was two and a half to three litres – now it's five. My muscle mass has also decreased and I regularly get painful erysipelas, so-called Saint Anthony's fire. I've had up to 100 episodes of erysipelas to date. In the meantime, I have reached the third and final stage of the illness and suffer from elephantiasis, which is a burden on my whole body".
Do you have any accompanying symptoms and, if yes, which?
"I have several of the accompanying symptoms that you can get with lymphoedema, in particular, lymphatic fistulas, lymphatic cysts and erysipelas. I've also suffered from a number of heart defects since birth."
How is your lymphoedema treated and how much of your time does the treatment take up?
"I combine many treatment options – depending on what is good for my body at the time. These include manual lymphatic drainage, the Lymphomat machine, bandaging and taping and, of course, I wear flat-knit compression hosiery. I get new compression garments twice a year. Luckily, I'm fit enough to put them on by myself, because I can only walk when I wear my compression stockings. I have 60-minute lymphatic drainage sessions twice a week, after which I immediately put my compression hosiery back on again, in order to maintain the treatment success. I also use the Lymphomat, the automatic form of lymphatic drainage, once a day. This gives me an overall feeling of well-being".
How do you organise your everyday life?
"My daily routine looks like this: after my morning shower, I disinfect my skin and apply moisturising cream. Then I put my compression garments on. Every day I wear double compression garments – that means toecaps and a compression class 3 thigh-length stocking under a compression class 3 pantyhose. This takes me 30 minutes every morning. In the evening, I get undressed and disinfect and apply cream to my skin again. Then I put on my bandages for the night. Applying the bandages is always a challenge, because you need different pressures during the day and at night. During my first stay at the Földiklinik, a therapist convinced me of how important it is to learn bandaging techniques. Today I'm very glad that I can do it".
What successes have you achieved with treatment to date?
"Every stay in a rehabilitation clinic is a success, because I always learn something new. I can also meet other patients and we can share our experiences with lymphoedema. This shows me that I am not alone with the disease. Lectures and talking with the doctors and therapists are often helpful and provide tips on how you can organise your life with the disease. What's more, I notice that keeping to my diet does me and my body good".
Have you ever had, or do you still face obstacles during treatment?
"Patients with lymphoedema need a spare set of garments, also with each follow-up prescription, for hygienic reasons. The compression garments must be washed every day and are subjected to considerable wear and tear, so new hosiery every six months is essential. I regularly have to battle with the statutory health insurance fund until they reimburse the costs. I would like more support in this respect".
What do you find important in terms of skin care?
"Daily skin care is very important, because the skin can dry out and become scaly very quickly under the compression garment. Itching or inflammation can lead to complications. That's why I use foam and various pH-neutral creams during the day and at night. Mild, soap-free unperfumed products are recommended. On hot days, I use a cooling spray that I spray directly onto the compression hosiery. I always advise patients with lymphoedema to try out different products, because each skin type reacts differently to any one product".
How important is compression for treatment?
"The compression garments are very important, because, in normal circumstances, good compression can keep oedema in check and even improve it".
Do you play any sports? And if so, which types of sports can you recommend for lymphoedema patients?
"I make sure that I move around a lot. At the moment, I'm doing Pilates. I also climb stairs a lot and I often go for walks or hiking. Sports such as swimming, Nordic walking, cycling and cross-country skiing are also suitable for patients with lymphoedema."
Does your lymphoedema impose any restrictions on your everyday life? Can you give us some examples?
"Clothes are always a stumbling block – with my unilateral lymphoedema, I can only wear a few fashionable trends. The heated seats in the car are a problem, because my bottom is also heated. If I go to the cinema and the seats are too close together, leaving me not enough legroom, I have to be careful that nothing gets constricted. And, of course, the compression garments are not particularly comfortable at temperatures of 30 degrees. There is no doubt that it requires considerable self-confidence to be able to cope with other people looking at you. It wasn't easy for me as a child or teenager, especially in the summer. It made me sad that everybody except me went swimming and wore short clothes. I've grown more relaxed as an adult and I've learned to cope with the illness, but, to this day, I've never been swimming and I don't wear dresses or skirts".
What do you pay special attention to regarding your diet?
"Due to the lymphoedema in my digestive tract, I'm not allowed to eat any fats and I stick to a very strict diet. I don't eat any French fries, pizza, cold cuts, cheese or ice-cream. I always check the ingredients of prepared foods, because many of them contain hidden fats. When I cook, I use medium-chain triglycerides, so-called MCT fats, as these are easily digestible fats. As a result of my disease, I've started cooking a lot for myself. Today cooking and baking are hobbies of mine. I try to learn a lot about foodstuffs and to find out what's good for my body".
How much can a lymph network help patients?
"Lymph networks are very helpful, because they provide lymphoedema patients with competent advice on all issues concerning their disease. It would be great if there were more of them. I would also welcome cooperation schemes between rehabilitation clinics, doctors and health insurers".
What advice would you like to give patients with lymphoedema?
"They should never give up and they should find out as much as possible, so that they can look after themselves properly. There are many forums where you can ask questions. Anybody who is dissatisfied with her doctor or therapist should have the courage to look for alternatives, in order to ensure they get the best possible care".
Ms Schade, many thanks for the interview.
Background: what is lymphoedema?
When lymph outflow is impeded and the lymphatic fluid accumulates in the interstitial spaces in the arms or legs, the limbs swell up. Those affected then suffer from lymphoedema. Learn more about the clinical picture, the symptoms and treatment.
Kirsten Schade was born with primary lymphoedema on one side of her body and knows how it is to live with this diagnosis. She is a state-registered family carer, complementary therapist for psychotherapy and a psychologist and has been running a counselling practice for ill and severely handicapped people in Moers since 2004.
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