Secondary lymphoedema following lymphadenitis
As a result of an inflammation of the lymph nodes, Lawin Kushaba developed massive lymphoedema. As the 29-year-old had little chance of effective treatment in her home country of Uganda, she sought help abroad - and came across Rainer Kraus, the first chairman of the "Lymph Association". In this interview, they both talk about how Lawin Kushaba was treated in Germany and how she is doing around a year later.
Dear Ms. Kushaba, you have secondary lymphoedema - when did it first appear?
"That was in 2014, when I suddenly had a painful swelling in my right groin - as well as a fever and no appetite. Three weeks later, I woke up with a thick foot, itchy skin and the swelling spread down my lower leg to my entire right leg. Over the next four years, I visited several doctors and hospitals and underwent various tests - unfortunately with no results. No one was able to make a diagnosis or treat the leg adequately. I even went to a healer, as traditional medicine is still very important in our culture."
How did he try to treat your disease?
"He cut the skin on my leg several times so that the fluid could drain away. He also made a recipe from numerous herbs, flowers and earth, which he applied to my affected right leg - combined with a magical ritual. According to the healer, I must have had a curse on me and my illness was a punishment for this - a widespread belief in my home country. Unfortunately, those affected are often hidden by their families out of shame or ostracized by society."
Socially isolated due to leg lymphoedema
Was that also the case for you?
"My family supported me as best they could and tried to support me psychologically, but it was a difficult time for me. I was shunned by my friends, they didn't want to be seen with me in public and I was also left out of social events. During my studies, my fellow students ostracized me and no employer wanted to hire me after I graduated - they thought my illness was contagious. They also said I wasn't physically fit. During this time, I was lonely and depressed - I missed the interaction and real encounters with people. Nobody understood what I was going through, I was completely socially isolated. My condition also got worse: the incisions scarred and my leg got thicker."
Who finally made the diagnosis of "lymphoedema"?
"Prof. Richard Kanyerezi from Kampala International Hospital referred me to KIMS Hospital in Hyderabad, India, in 2018. The vascular specialist there immediately recognized that it was lymphoedema and performed a lymphoscintigraphy to determine the severity of the lymphoedema. In a lymphoscintigraphy, lymph vessels and lymph nodes are visualized using a radioactive drug and the lymph drainage is analyzed. In addition, a Doppler sonography was carried out, an ultrasound examination to determine the blood flow velocity in the vessels. This was the first time I had ever heard of the condition. I was advised to buy compression stockings and a lymph pressure device, which unfortunately didn't bring any noticeable improvement."
Raising public awareness of the disease lymphoedema
How did you come across Rainer Kraus and his lymph club?
"My aunt Fredica Baguma, who works for a non-governmental organization, put me in touch with Rainer Kraus and his "Verein zur Förderung der Lymphoedemtherapie e. V.", or "Lymphverein" for short, via a few corners - that was at the beginning of 2020. But then the coronavirus pandemic hit and all plans were put on hold. I was devastated, but I kept in touch with Rainer Kraus and his wife Martha, who is also from Uganda. In 2022, I went public because I was tired of hiding. I wanted to raise awareness of the disease in order to finally be free from prejudice and discrimination - and to get help. Through a TV appearance and contacts in the Ugandan government, I was able to collect donations, some of which made my subsequent stay in Germany possible. I also raised awareness via social media."
Mr. Kraus, why is it important to you to support people with lymphoedema?
"The medical profession's knowledge in the field of lymphology is still incomplete - as a branch of medicine, it only plays a subordinate role in medical studies. The consequences of this are often misdiagnoses and incorrect treatments. The situation is even worse abroad! In addition, lymphoedema sufferers have a heavy burden to bear and are often restricted in their ability to perform. In order to cope with their fate, the support and care of those around them is of the utmost importance. That is why we have set ourselves the goal of doing everything we can to improve the care of chronically ill people - and to help them achieve a better quality of life. The joy of seeing our efforts succeed is the source of energy we need to fulfill our mission!"
Treatment at the Lympho Opt Clinic Pommelsbrunn
How did you help Lawin Kushaba specifically?
"Originally, an experienced lymph therapist, who had already been on several humanitarian missions abroad for the Lymph Association, was supposed to fly to Uganda to give Lawin Kushaba intensive decongestive therapy. However, this was not possible due to the travel ban in times of coronavirus. However, we used the time wisely and made contact with the Lympho Opt Clinic in Pommelsbrunn, a specialist clinic for lymphology. The medical director of the clinic, Dr. Franz-Josef Schingale, had co-founded the lymph association in 1999 and agreed to treat Lawin Kushaba. We were able to organize an examination for a filarial infection despite the distance, which could thus be ruled out."
Who covered the costs of treatment and travel?
"The visa, health insurance and part of the treatment costs were covered by donations collected by Lawin Kushaba in Uganda. The rest of the money came from the Lymph Association, to which I donated 6,000 euros due to the tight financial situation. Fortunately, I am personally in a position to spend time and money on projects that are close to my heart. On April 26, 2023, the time had come and we were able to pick her up at the airport in Nuremberg and drive her to the Lympho Opt Clinic."
Contact with other lymphoedema patients and the medi
Dear Ms. Kushaba, how difficult was it to come alone to a foreign country where you didn't speak the language?
"It wasn't difficult for me - on the contrary, I was looking forward to finally receiving help and adequate therapy. Rainer Kraus and his wife took me into their family so kindly and looked after me so well during my stay. I visited them every weekend and talked to Martha Kraus in our mother tongue - that was a little piece of home for me. The language barrier was a big hurdle in everyday life, but I was able to communicate with a translation app. I also quickly made contact with other people affected, for example Ursula Thomé, who had been diagnosed with lymphoedema after suffering from cancer. It was nice to talk to other sufferers, share experiences and feel understood for the first time. I met Ursula Thomé several times during my stay in Germany - she also put me in touch with medi, with whom Ursula Thomé has been working closely for years. medi employees then measured me and provided me with custom-made medical compression stockings and the medical adaptive compression system circaid juxtafit free of charge."
Medical adaptive compression juxtafit as part of the therapy
How were you treated at the clinic?
"The therapy consisted of two stages: the decongestion and maintenance phase. In the first few weeks, Dr. Franz-Josef Schingale and his team used short-stretch bandages to reduce the accumulated fluid in my tissue. As my skin was itchy at first, I only wore the bandages irregularly for two weeks and later on every day. I also used circaid juxtafit as it was easy to put on and take off. I was able to set, check and readjust the individual compression pressure precisely using the measuring card. Unlike the wrap bandages, it didn't slip, was comfortable to wear and I could move better with it on. Since decongestion, I have been wearing the mediven 550 medical flat-knit compression stocking. I have also received manual lymphatic drainage as well as training on nutrition and skin care, and I exercise a lot."
How comfortable do you find wearing medical compression stockings?
"I feel perfectly wrapped up all round! My legs are kept in shape and the swelling is reduced. If I don't wear the medical compression tights, the fabric hardens and my leg circumference increases again, as does my pain. I also think they look great and are easy to combine!"
How long did you stay in Germany?
"Around four months until August 25, 2023. Overall, I am very satisfied with the therapy mix and the results: my lymphoedema has decreased noticeably and my symptoms have subsided - I feel better, am optimistic about the future and have regained a lot of quality of life. I have learned to accept my body without compromise and to take good care of myself. I now also have the confidence to post photos of myself on social media and show myself in any outfit I like."
New lymphology therapy center in Uganda
How can you currently continue your therapy in Uganda?
"Using circaid is very easy - I received professional instruction in Germany. I also received basic training in manual lymphatic drainage at the Lympho Opt Clinic and learned various methods of self-treatment. In Uganda, we do not have professionally trained doctors or therapists in the field of lymphology. I would therefore like to pass on my knowledge of self-treatment to other patients. We are currently converting a former school into a therapy center with the help of the Lymph Association. My goal is to open the eyes of politicians, opinion leaders and health experts and to expand medical care across the board. Chronically ill people need our attention and must be provided with medical services just as effectively and sustainably as in other parts of the world. I would like to thank everyone for the kind support, love and care I received in Germany."
What is the concept of the therapy center?
"The idea came from Rainer Kraus and his wife. It is modeled on the Institute of Applied Dermatology in Kasaragod, India. The treatment concept includes Western medicine combined with Ayurveda, homeopathy, yoga and other traditional medical systems. A family member or friend must always be present for therapy. This person learns the treatment that the patient will continue to need at home after completing the inpatient treatment - this is how we ensure lasting success. Follow-up telephone advice is also included if, for example, a medical problem such as erysipelas (erysipelas = bacterial infection) occurs.
The therapy center will also serve as a training center for doctors, therapists and local health workers who will pass on their knowledge."
What advice would you give to other lymphoedema patients based on your experience?
"There is hope for treatment and those affected can play an active role in managing their condition! In my opinion, medical compression therapy is by far the most important component in the treatment of lymphoedema! We must wear our medical compression garments consistently, otherwise the condition will worsen and the pain will increase. Exercise and the right diet also make a significant contribution to improvement. And don't forget: No one is alone with their condition! We are one big community and we support each other. We bring joy and happiness into our lives and give each other beautiful moments when we need them most."
Dear Ms. Kushaba, thank you very much for your personal insights and the interview!
