Dr. Richard Lewin lectures at the Jönköping Lymph and Lipedema Society's annual meeting
Yesterday I was invited to speak at the Jönköping Lymph and Lipoedema Society's annual meeting . Lipoedema was described a long time ago and as early as 1951, proposals were made for how this disease should be diagnosed. Despite this, the disease is not accepted within public healthcare in Sweden. It is almost exclusively women who suffer from lipoedema and the cause is still unknown. Yesterday, many of the women testified about how stepmotherly they have been treated and treated within healthcare. Certainly not out of rudeness in most cases, but probably due to ignorance combined with poor empathic ability.
Lipedema has not been scientifically studied to any great extent and the studies that do exist are not of particularly high scientific quality. Most agree that more and better studies must be conducted. Unfortunately, this takes time and many of these women suffer both physically, mentally and psychosocially. They have difficulty finding clothes that fit, sometimes cannot use boots when they go out into the woods with their children for a walk, they have pain and can have problems with oblique loads in their knees. The studies that do exist show that lipedema fat is almost impossible to reduce with diet and exercise. However, there is often an element of excess weight that can be influenced by a healthy lifestyle with good food and exercise. Pool training is often experienced as pleasant. Compression pants or support stockings can provide relief from pain and perhaps also reduce the amount of bruising, but they are unlikely to prevent the development of lipedema. Support stockings are considered to have a good effect on lymphedema, which can occur at the same time as lipedema.
There is a connection between lipedema and estrogen and the condition often starts during adolescence but also in connection with pregnancy. For many women it is of course very difficult in various social situations, depression and even anorexia occur. It is probably important to get a diagnosis and help early before obesity and more advanced forms of lipedema arise. When conservative treatment, such as compression therapy, does not help, liposuction is often the option. The volume of fat is reduced, which makes it easier to choose clothes and often the pain disappears or at least reduces. The numbness and feeling of heaviness in the legs in connection with exercise can be reduced.
Interview with Karen Herbst about lipedema and Dercum's disease. In her research, she has seen that lipedema and Dercum's disease, DD, are similar to each other, that some patients have a combination of the diseases and that obesity is another disease that many patients have. Research, education and treatment of these diseases require this to be taken into account. While more research is needed on both the diseases and treatment methods, Karen Herbst emphasizes that patients must be offered treatment, and that they need to be offered combinations of several different treatment methods as it is very individual what is best for the individual patient. Dr. Karen Herbst, an endocrinologist from the USA, lives and works in Tucson, Arizona. She is a specialist in adipose tissue diseases such as lipedema and Dercum's disease. She mainly does research but also leads a clinic with the TREAT treatment program, Treatment, Research, Education for Adipose Tissue, at Arizona University. She is also one of the researchers in the Swedish TeamDercum.
What struck me most after this evening was how difficult these women often experience their situation and how helpless they feel. For various reasons, they do not receive any real help in the publicly funded healthcare system, but their suffering is great and it is only right that their problems are taken seriously. Not infrequently, they have been treated poorly and with downright offensive comments by those from whom they have sought help.
What should be established is a multidisciplinary care with a dietician, physiotherapist, occupational therapist, personal trainer, lymphatic therapist and plastic surgeon . With joint commitment we could make a big difference! We will do what we can through our network but hope that the healthcare system will soon help all those who are unable to pay for the care that we all finance with our taxes.
Dr. Richard Lewin
