L-W-O Community
Primary, Secondary & Paediatric
Lymphoedema
Online & in the Community
Promoting Lymphatic Health,
Self-Care
Patient Empowerment &
Community Engagement
L-W-O Community Supports
World Lymphoedema Day
March 6th
Lymphoedema Awareness Week UK 4th - 8th March 2024
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One of the most amazing aspects of running L-W-O Community is the amazing people I meet whether that person is one of our members or one of the many professional people in our community. Mary Fickling of PhysioPod UK Ltd is one of the great people I met through Twitter in 2017 and has been an inspirational supporter of ours, sharing our blogs, occasionally offering advice, and becoming a valued friend. We originally met in 2018 and reconnected at the MLD Conference in 2019.
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Mary Fickling
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Over the last four years, Mary and myself have spent countless hours working together to promote awareness and boost knowledge of lymphoedema, producing three digital lymphoedema awareness campaigns that were recognised globally.
We continue to be independent soundboards for each other's ideas, frequently proofreading each other's work, and working toward a similar objective of improving patient awareness of lymphoedema, a chronic long-term disease that causes swelling in the body's tissues.
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In previous years, Mary and I have run joint campaigns for #WLD and #LAW. Unfortunately, time restraints have not permitted us to create a lymphoedema awareness campaign this year.
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To view our prior campaigns, click the buttons below.
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CALL TO ACTION
Gaynor Leech
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A personal message from me on behalf of all of our members and followers, as well as anyone else dealing with lymphoedema.
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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”.
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Patient Voice
I am passionate about giving those that live with lymphoedema a voice.
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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.
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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 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
community
Introducing Patient Advocates for Lymphedema in Europe
In the previous four years, I have had the privilege in a small way, to work on behalf of the L-W-O Community with other patient associations, including European Patient Advocacy Group (ePAGs) as a patient representative
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This resulted in the first joint Manifesto of European Patient Associations in March 2020, then repeated annually from 2021 to 2024, with a call to action to raise the profile of lymphoedema in the UK and Europe. The manifesto is translated into the language of the patient association involved and has been an enormous success and has been well received across the globe. I am pleased that the manifesto will be presented this year, along with a video of the European lymphoedema patient groups who have participated.
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Twenty-six European Patient Associations involved in the WLD campaign for 2024
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In the UK, the L-W-O Community and Karen Friett CEO of the Lymphoedema Support Network are actively involved. We are frequently asked, "Why are you in this group since the United Kingdom is no longer a member of the European Union?"
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"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".
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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, many of whom have insufficient awareness of the lymphatic system due to lymphatics not being fully covered at medical school.
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#PatientEmpowerment #CommunityEngagement
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Joint Video 2024, Manifesto, and Press Release from Patient Associations
In 2024, nine European advocates filmed a short video statement from our manifesto in their native language, including a call to action. English subtitles are available by selecting the closed caption button on the right side of the YouTube video.
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Patient Advocates for Europe also have their own Facebook page
The above 2024 Manifesto is co-signed with the logos of each of the twenty-six patient associations involved.
Press release written by and for the Patient Advocates for Lymphedema in Europe.
Resources
Register for BLS Webinars for Lymphoedema Awareness Week
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BLS Guidelines on the Management of Cellulitis
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BLS Lymph Facts: What is Lymphoedema?
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The BLS Children with Lymphoedema Special Interest Group (BLSCLSIG)
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Lymphoedema Support Network (Facebook "Lymphoedema looks like this")
International Lymphoedema Framework Series on Webinars on Facebook
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Lymphatic Education & Research Network (LE&RN)
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Before you go. Do you like what you see? L-W-O Community receives no official funding, and we rely on the goodwill of our readers. Please consider taking a yearly subscription so that we can continue to provide information for those that live with lymphoedema or if you prefer please support us and make a donation on our GOFundMe page:
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That's a Wrap
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That's a wrap for this year's campaign supporting Lymphoedema Awareness Week and World Lymphoedema Day.
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Every day is a challenge to our physical and mental wellbeing
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Finally, there is still plenty to do; as a community, we have a long way to go, and we are not going anywhere in the near future. Thank you to everyone who has supported L-W-O Community during our campaign; please continue to help us promote patient empowerment and community participation.
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With support - we thrive
With knowledge - we overcome
With kindness - we believe
With love - we find optimism
Gaynor
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