Lipedema – an unknown disease but many involved actors!
Lipedema – or Lipohyperthrophy dolorosa – is a painful fat distribution disorder from which, according to studies, 10 percent of all women are suffering from. Men are usually not affected.
Lipedema are fat cells in the subcutaneous fatty tissue which reproduce and extend themselfs pathologically. This leads to a disability of the lymph drainage. There is more fluid in the interstices of the cells, resulting in water accumulations, the so-called edema. The consequences are strong pain, a propensity to hematomas after minor traumas and pronounced sensitivity to touch. Heavy legs, unexplainable lumps on the extremities and knotty texture are more symptoms of lipedema. The skin becomes more uneven and remarkable buckles evolve. In a more advanced stage or with the wrong respectively no treatment a so-called lymphedema can develop.Causes and triggers
Unfortunately the trigger of this illness is currently not known; as a possible cause, hormonal and genetic components are brought forward by different researches; lipedema often occurs generation-spanning by multiple women within a family and the condition worsens with hormonal fluctuations (puberty, pregnancy, climacteric period, hormonal smelting)
Despite the abundance of this chronic and advanced disease, it is relatively unknown. Most women are not even aware that they are affected for years.
A competent lymphological specialist (phlebologist, angiologist, venereologist or a dermatologist with the appropriate additional qualification) should diagnose the disease. The diagnosis usually takes place by anamnesis (disease history), inspection (look) and palpation (touch). Additionally, a back-up check as well as a distinction to other secondary diseases a medical ultrasonic examination should be conducted. Patients report that nowadays it is very difficult to find a doctor who is familiar with the disease and the proper therapies. Consequently, the diagnosis comes often too late, when a lot of women are already in an advanced stage of the disease and have a long walk through hell behind them.
An adequate and early therapy is extremely important with a chronic medical condition in order to control and contain the progression of the disease.
A lipedema always requires treatment! The conservative therapy consists of a manual lymph drainage which should be carried out by a skilled professional physiotherapist. A lot of patients need this kind of treatment several times a week. The second pillar of the so-called complex physical decongestive therapy is to wear tailored, flat knitted compression stockings. Patients must be carefully measured in a sanitary facility for the preparation of the compression stockings according to the manufacturer´s specific instructions. Material, space, time and the required know how are therefore of essential importance, so that later on, the provision fits perfectly and can serve its purpose: to diminish the swelling and inhibit the accumulation of new edemas. Same as before, those affected report that it is not easy to come across competent qualified personnel, since the special flat knot provision indicated for lipedema distinguish itself considerably from the circular knitted version, which is conflicting with lipedema. The experience in this area is missing in most of sanitary institutions, to correctly advise and supervise the patients.
Since lipedema is a chronic disease, there are no guaranteed curative therapies. A lymph-protecting liposuction with a special surgery technique adapted to lipedema, the suffering of the affected women can be significantly eased and according to a study (Schmeller, Baumgartner, Hüppe, 2015) it can even have a resembling healing effect for years. Throughout Europe there are only a few surgeons, who are specialized in liposuction for lipedema and who have been able to gain a serious amount of experience over the years, to treat lipedema patients successfully and train other doctors. To find those doctors is sometimes similar to looking for a needle in the haystack.
Within the framework of a surgical intervention, an additional drug therapy cannot be avoided. Often antibiosis, painkillers and thrombosis prophylaxis are subscripted. At this point the pharmacy comes at play. Some of the affected patients, independent form a surgical intervention, are only able to manage everyday life with the help of analgesic medication.
The lipedema disease is a good example to show how many different healthcare professions can be involved to cure one illness. So you possibly can imagine why for patients, who suffer from a chronic disease, it is very important to have a trustworthy relationship to all the healthcare providers, who guide them through therapy over the years. Lipedema is not a rare disease – even if it is relatively unpopular – yet it is very difficult for the affected to find competent doctors, surgeons, physiotherapists and pharmacies.
Are you looking for a doctor, therapist with experience or do you want to share your own experiences?
At the moment Meopin is developing an online-platform for healthcare professionals. In the near future Meopin will offer a simple and fast solution to find competent doctors and specialists, skilled therapists and other healthcare professionals at home and abroad. Through the controlled rating system, provided by Meopin, users will read about experiences and reviews from other patients about a particular healthcare provider. For example patients can specify if a doctor has particular knowledge or experience about a specific disease.
Likewise, present providers have the possibility to create their own Meopin profile and explain to the user his / her specialties, extraordinary treatments or therapies, how much experience they gained of different illnesses over the years.
Meopin will facilitate the life of providers and patients. Meopin will fundamentally change the relationship between healthcare professionals and patients, by creating an interactive online platform to simplify the search for an appropriate healthcare provider and ideally make an appointment. This will allow patients and providers to save time and eliminate misunderstanding beforehand, which is in the best interest of both parties.
To stay updated on the project evolution and to not miss the upcoming launch of Meopin, subscribe for our newsletter below.
You can find out more about the disease of lipedema at the website of Lipödem Lëtzebuerg a.s.b.l.
Article published in cooperation with Lipödem Lëtzebuerg a.s.b.l.
Your Meopin Team