World Lymphedema Day
Diverse crowd celebrating World Lymphedema Day

New organization

Stockholm, Sweden

The union works to ensure that every patient with Lymphedema, Lipödem and Dercum gets their diagnosis and an optimal individualized care that is equally regardless of where you live in Sweden or which sex you have. If care is not available within the county council / region, it should be procured from private actors within Sweden or the EU. It’s about thousands of patients. We demand that county councils / regions cooperate and together with Försäkringskassan make sure that each patient gets a dignified life and continued active working life.

Although in the 17th century we found the lymphatic system in Sweden, these diseases have been forgotten in healthcare. More family doctors must read the diseases to be able to receive and diagnose and within each region it must be clear which guidelines apply and where the doctors should send the referrals. There are few lymphatic workers with the education required by the care. Uneven procurement of course provides unequal care in the country. The way to diagnosis today is to exclude other diseases through referrals to specialists, a heavy factor financially. Even operations such as gastric bypass, which do not help but provide another lifelong disability, are immersed in the patient in pure ignorance from the care. Aftercare is transferred to patient associations that are not found in all places, but patients are referred to youtube films. This is not worthy or even economically justifiable.

We find that there are few representatives who drive and act on these issues. The years go by and demands from the policy on evidence in these particular issues have turned to absurd. It is something that is wrong when one of the body’s most important systems is not included in the public health care system or does not even have a professorship and research while Swedish research-based evidence is required. Sweden is part of the EU where now Germany takes in operations of lipid edema in general care. Fast and unbureaucratic according to Jens Spahn, health minister. It is time that Sweden hooks on development to take these diseases seriously and provides care now?

IngMarie Bohmelin, chairman of Lymf Sweden, Federation for Lymphedema, Lipödem and Dercum.

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