CALL TO ACTION
A personal message from me on behalf of all of our members and followers, as well as anyone else dealing with lymphoedema.
I'm urging everyone in the lymphoedema/lymphedema community to share our postings on social media so that we may reach out to patients, the general public, physicians, lawmakers, policymakers, and health care professionals. We will use World Lymphoedema Day (WLD) and Lymphoedema Awareness Week (LAW) to show the world that:
“Lymphoedema exists, we exist”.
I am passionate about giving those that live with lymphoedema a voice.
Our World Lymphoedema Day campaign continues to reach more individuals worldwide than I could have dreamed. Everything I do revolves around patient empowerment and community engagement.
This year, my goal is to reinforce our aims by continuing to raise the voices of people living with lymphoedema in order to promote lymphatic health, provide self-care information, and improve overall well-being.
L-W-O Community is proud of our efforts to raise awareness of lymphoedema/lymphedema among the public, patients, patient advocates, patient associations, and healthcare professionals.
Proud to be part of a wider lymphoedema/lymphedema/lymfødem/lymfoedeema lymfödem/lymphoedème/linfedema/linfoedema/lymphödem
European Patient Advocacy Group
The last three years I have had the privilege in a small way to work on behalf of L-W-O Community with other patient associations including being part of the European Patient Advocacy Group (ePAGs) as a patient representative
This led to the first joint Manifesto of European Patient Associations in March 2020 and subsequently in 2021/2022 with a call to action to raise the profile of lymphoedema in the UK and Europe. The Manifesto has been an enormous success and has been well received across the globe. I am thrilled that we are launching the manifesto for World Lymphoedema Day 6th March 2023 along with our twenty-four patient associations and translated into twelve languages.
Patient Associations involved in the WLD campaign for 2023
In the UK I am proud that, L-W-O Community is involved as is our friends from the Lymphoedema Support Network. I often get asked the question "Why are you part of this group, if the UK is no longer part of the EU".
Although we are no longer part of the European Union the lymphoedema patient community remains committed to maintaining a collaborative approach to improving awareness, equity, and access to care across Europe and beyond.
In an ideal world if patients, patient advocates, patient associations and lymphoedema organisations work together we will raise the profile of lymphoedema, improve the quality of care for lymphoedema patients, educate the public, and clinicians the latter who have little knowledge of the lymphatic system.
Joint Manifesto 2023 and Statement from Patient Associations
Joint Statement from Patient Associations
World Lymphedema Day March 6th is once again being celebrated with a remarkable collaboration among patient associations across Europe. Twenty-four patient associations have collaborated to co-sign a manifesto which has been translated into 12 languages, to express their views and wishes for patients living with lymphedema.
Lymphedema is a chronic disease of the lymphatic system that presents as swelling of one or more body parts. It is estimated that lymphedema affects 250 million people worldwide of all ages and any gender. There is currently no cure and daily and constant management is needed to prevent progression of the disease. Lymphedema can have many different causes, for example it can be hereditary and present at birth or occur as a consequence of cancer treatment or other surgery.
Unfortunately, many health care professionals still do not know about lymphedema or its signs and symptoms, which often means patients suffer for years before they get a diagnosis and can begin treatment.
Compression forms one of the essential treatments for lymphedema and difficulties in obtaining the correct garments is one of the main problems for patients and their carers. A new website, created by the patient associations and translated into several languages is being launched to explain to patients and carers the importance of correctly fitted garments.
Sweden currently holds the presidency of the Council of the European Union and will do so until June 2023 and therefore a meeting has been set up with the Swedish Minister for Health Care, Acko Ankarberg Johansson and the patient associations behind the manifesto.
The Minister will hear about the struggles of a family that includes a child with lymphedema, learn how the website and manifesto initially came about and be informed about the challenges associated with the care and treatment of lymphedema.
The associations hope the Minister will take the manifesto and their wishes back to her peers in the Council of the EU.
The meeting will be recorded and made available for viewing afterwards.
Contact your local patient association for more information.
In 2022 European advocates provided a profile photograph with a short message of why they are passionate about working in the lymphoedema community. It is my pleasure to introduce you to some of the members of the Patient Advocates for Lymphoedema in Europe (Facebook link) via this video. We all work tirelessly for our respective Patient Associations across Europe. The enthusiasm for raising awareness of lymphoedema/lymphedema is immeasurable. Most members live with lymphoedema, and I am immensely proud to be a member of this dedicated group as we all strive to push for patient empowerment and community engagement wherever we live in the World.
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That's a Wrap
That's a wrap for this year's campaign supporting Lymphoedema Awareness Week and World Lymphoedema Day.
Every day is a challenge to our physical and mental wellbeing
Finally, there is still lots to do, we still have a long way to go, and we are not going anywhere for the near future. Thank you to all those who have supported us in our campaign, please continue to support and help us to improve patient empowerment and community engagement.
A huge thank you to Mary Fickling for your generosity of time for me, and L-W-O Community my mentor, my teacher, my friend.
With support - we thrive
With knowledge - we overcome
With kindness - we believe
With love - we find optimism