Welcome to our project website
A European initiative of lymphoedema and lipoedema patient advocates to put compression #UnderPressure.

Obtaining the correct compression garments is a challenge for many European patients living with lipoedema and lymphoedema. This was the outcome of a survey conducted for a joint World Lymphedema Day (WLD) March 6th campaign "put compression #underpressure".  This website is an initiative based on the outcome.

A website with basic tips and tricks for people wearing compression garments. We hope this information will help you obtain the correct compression. 

See below for more information about this unique European WLD campaign and the outcome of the survey; numbers you need to know!

A special thanks to Tessa van Vuuren. She made all these wonderful drawings and illustrations for us.

It is estimated that 250 million people worldwide are affected by lymphoedema. There is varying information on how many are affected by lipoedema, but it is believed that 4 - 10% of adult women worldwide is to be affected by lipoedema.

Medical compression garments are a fundamental part of the management of lipoedema and lymphoedema. Lymphoedema can deteriorate without compression. There is a higher risk of complications such as infections which can lead to hospital admissions and reduced mobility as well as having a significant impact on the ability to work and quality of life. 

Both are chronic conditions and there is currently no cure for them. Many patients need to wear daily medical compression garments that are professionally fitted. Compression garments should be washed after each use to ensure maximum efficacy and replaced every six months.

To understand the scale and impact of obtaining the necessary compression garments, European patient associations united to gather their thoughts and the opinions of those to whom it matters most, the patients and their carers.

In 2020 we launched a successful World Lymphoedema Day campaign. Based on this collaboration among the European patient associations, we decided to put compression #UnderPressure.

A Google Form survey was created with one single statement:

“I struggle to obtain the necessary garments to manage my lymphoedema or that of the person I care for (prior to the pandemic or without cause of Covid19)”

The statement could be answered on a scale from 1-5 with 1 being “I strongly disagree” and 5 “I strongly agree” with an additional option to write what struggles the patient/carer had experienced.

Patients or carers had the option to write the difficulties they experienced with compression garments.

The English version was then translated into other languages: Danish, Dutch, Finnish, German, Italian and Portuguese. The patient associations shared the survey on different social media platforms and/or via emails. Within one week the results of the survey were collected and discussed.

608 patients responded that they struggled to obtain the necessary compression garments to manage their lymphoedema or that of the person they care for. Answers where on the scale of 1-5. It is now important to explore further the written comments behind the key issues and decide what actions need to be taken in collaboration with the stakeholders including the patients.

That is why we, as a team of patient advocates started this project website and compression community.