Brussels, 29 october 2017
Report Patient Day 29 october 2017
On Sunday the 29th of October, Belymph organised her first patient day for persons with lymphedema. We welcomed a good number of patients on our campus in Anderlecht. That’s why we can call this first edition a succes.
The day started with an introduction by Dr Liesbeth Vandermeeren. After that, Miss Goedele Van Damme, dietician at the University hospital Leuven gave her lecture about the infuence of nuriture on our body and on the development of lymphedema. She explained the link between overweight and lymphedema. She also warned us that persons who have a BMI above 30 have much greater chance in developing lymphedema. Of course, more research is needed on this topic. For example, the link beween a ketogen diet, where the intake of carbohydrates is reduced, and the development of lymphedema hasn’t been thoroughly investigated yet. Goedele emphasizes the importance of a good balance between food and energy intake versus energy consumption to maintain a healthy body weight.
Subsequently we had a patient testimony by Mrs. Sabine Stein. She is a patient with primary lympedema who adjusted her lifestyle since she got the diagnosis of lymphedema. Mrs. Stein spoke about the treatments she got from her physical therapist and also about her dietary habits and physical activity. She also shares her experiences on her blog. You can follow her on instagram (@binibollie) and on Facebook (Walk on Clouds – Lymphies in Belgium). Her goal is to share experiences, recipes, tips and tricks on the web between lymphedema patients, but she would also like to organize adjusted
The next lecture was about physical activity, sports and lymphedema. Prof. Dr. Nele Devoogdt from the University Hospital and University of Leuven gave an explanation about the physiology of the lymphathic system during activity. Research shows that sports and activity result in a greater loss of fluids from the blood capillaries, but also stimulates the resorption of those fluids by the lymph capillaries. Furthermore, physical activity also stimulates the transport of the fluids through the lymph vessels. Even in lymphedema patients, who already have a disturbed lymph transport, we expect no increase of edema after physical activity, even high performance physical activity and endurance sports. This is due to a couple of compensation mechanisms. Movement stimulates the muscle tissue in our lymph vessels. It also stimulates our breathing, our muscle contractions and the pulsations of our arteries. All of these mechanisms increase the transport of lymph fluids in our lymphatic system. Additionaly, physical activity also stimulates the growth of new lymph vessels and activates non-working lymph vessels. Conclusion, physical activity, resistance training and endurance sports are all allowed and even recommended for patients with lympedema on condition that the exercises are gradually progressive. Professional guidance is recommended.
The last speaker of the morning session was Mrs. Brigitte Clerinks. A very active lady with a number of physical activities such as Yoga, gymnastics, tennis and swimming. She advises to choose one sport that you really like to do within your possibilities. She also emphasizes that it is important to have good professional guidance and that it is imperative that you gradually built up your activity. She has nothing but good experiences with sports and physical activity. It has a positive effect on her general condition, but also her social life and self-confidence are boosted. Sports is a feel good drug.
During a delicious sandwich lunch, there was possibility to visit the sponsor stands. The afternoon session started with a presentation of stylist Petra Vlecken about styling for lymphedema and lipoedema patients.
What should we take home? Use mainly natural fabrics such as silk, wool, cotton and linen. First because of the better quality, but also because these fabrics are healthier, adapt better to the body and offer more comfort.
Mainly wear fabrics without prints, clothing with similar colours and vertical lines. Prints, shiny fabrics and horizontal lines are better to be avoided. These draw extra attention to our problem zones. We prefer to pay attention to a nice neckline, for example in lace or with a boat neck. Coats with low sleeves or capes pinch less around the edematous arm. When choosing a blouse, one with a wide sleeve that narrows to the wrist is preferred. This may be in a bright color or with a small print.
Patients with lower limb lymphedema sometimes have trouble choosing the right pants or the right dress. Mrs Vlecken recommends dresses with an A-line and a length below the calf. In the summer a linen dress, in the winter it can be more playful with wool or sweater fabric. Jeans are available in many sizes and fabrics. Choose a cotton stretch jeans. Boyfriend model for men and a long, straight model for women. This is nice to combine with a long blazer. She also gave some advice about shoes. Boots are usually difficult. Fortunately, there are also very elegant ankle boots. Choose boots with a wider heel, these are more beautiful in proportion to our lower legs. A pointed or rounded nose is also more elegant. More information on the website Profile or Facebook Profile Boetiek.
Mrs Lotte Martens, textile designer, presented the next session. She refers to her knowledge as designer and personal contacts with edema patients. She specializes in the production of beautiful, printed compression stockings. Research showed that adherence to the treatment with compression stockings is very low. There are several reasons for this. First, itching, heat and little comfort. More and better textiles are being developed for this. A second reason is the difficulty to put on the compression stocking. However, new tools are available for this. Thirdly, the lack of aesthetics is also an important barrier for wearing compression stockings. This is what Lotte Martens wants to tackle. She wants to add beauty to the 'ugly' compression stocking. Therefore, patients can be more proud, less socially isolated and happier. She prints different patterns on existing stockings. The new line will be launched in February 2018. For more information you can check the website: www.beaufort.plus.
Mrs Karine Tollenaere goes a step further. She is fully engaged in the development of a clothing line especially for patients with lymphedema. Lymphwear, elegant and comfortable clothing to promote the dignity and self-confidence of patients with lymphedema. She already conducted extensive research on this topic using questionnaires. As a result, she could better understand the problem and also get a good view of the need for appropriate clothing. Karine received 108 responses from women, only 1 man answered the survey. This research showed that 75% of this population indicates that they experience problems finding suitable clothing and 95% indicate that they would definitely buy appropriate clothing. This can be done online, in a specialist store or in an existing clothing boutique. Currently, Mrs Tollenaere is fully engaged in the development of her clothing. This in collaboration with Caroline Biss and Crea Moda and Flanders Fashion BC. A first prototype is currently being developed and produced in South Africa. It is a top for ladies with a large arm circumference.
The last speaker of this interesting day was Mr. Nicolas Beauloye, psychologist at the breast clinic of the Sint Pieters Hospital in Brussels. Mr Beauloye presented the effect of lymphedema on the quality of life, on sexuality and on the self-image of the patient. The physical changes due to cancer and lymphedema also bring psychological changes. Each patient experiences these changes in a different way, based on their own personal and family history, as well as their relationship with relatives and their psychological functioning and illness experience. During the acute phase of the disease, the patient experiences the affected body part as not of him or herself. The body is often touched within a medical context, patient loses autonomy and control over the body at that moment. This means that the patient must redefine his emotional life and sexuality. It is important that caregivers pay attention to this aspect. Research shows that only 14% of patients dare to talk to a doctor about this. Patients think that doctors do not want to talk about this because of lack of time. For the doctor this is not always the priority, they focus on treatment and physical complaints during the consultations. Mr. Nicolas Beauloye pleads that every caregiver provides the opportunity for communication. Usually this should not happen during the acute phase of the disease, but certainly afterwards. Caregivers should try to talk to the patient about changes in sexual experience during the course of the treatment, and the partner should certainly not be forgotten. A conversation with a psychologist is therefore certainly not superfluous. Patients or couples can gain a better insight into the 'new' situation. A psychologist can help to implement a new form of intimacy. He or she can also offer support and helps the patient and the partner to reconcile with the situation. More informations on the Lymphology Clinic of Brussels website.