L-W-O Community supports primary and secondary lymphoedema by promoting emotional wellness, lymphatic health, self-care, patient empowerment, online and in the community.
About L-W-O Community
I have secondary lymphoedema.
My name is Gaynor Leech, and I am the founder of L-W-O Community. I am proud to be a patient advocate for those living with lymphoedema.
Founded in September 2013, L‑W‑O began as “lymph‑what‑oedema.” While the name remains the same, our growth and evolution have inspired important changes that reflect who we are today.
In 2021, I changed our name to L-W-O Community, rebranded, and introduced a new logo. L-W-O has evolved into a distinct group with its own social media presence, and the greater lymphoedema community recognises our valuable contribution.
Those of you who are familiar with L-W-O Community will be aware of my background and how I became a patient advocate, which was not an overnight process. Along the road, there have been a lot of hiccups. Here is a condensed version of my story for those who are unfamiliar.
I was given the news that I had breast cancer in late 2010 during a routine mammogram. Without the mammography at such an early stage, my breast cancer would not have been discovered because it was in the tissue rather than a lump. My long-term prognosis was favourable; I underwent a brief surgery to remove the problematic tissue and underwent radiation treatment for 15 days to eradicate any leftover cells.
I never received any information that the radiotherapy treatment would lead me to develop lymphoedema, a lifelong and incurable illness, in addition to destroying the cancer cells.
When I received my diagnosis, there wasn't much information, support, or assistance that could have helped me comprehend my new condition. I felt doomed and was filled with fury and disbelief. Anger evolved into a drive to better not just my life but also the lives of other lymphoedema patients.
How we Evolved
After being diagnosed with lymphoedema, I dedicated two years to learning about my condition and soon realised that the UK needed additional patient support. There were a few small online support groups for lymphoedema at that time.
From the beginning of gathering information following my diagnosis in 2011 to the publication of our first website and community page in September 2013, followed by our online support group in 2014 and other social media platforms, I have found that this entire journey has been a steep learning curve.
Wherever you may be in the world, people who have lymphoedema have organised themselves to help one another. Our support group has a global reach and operates 365 days a year, around the clock. Talking to someone who understands how we feel is sometimes all it takes.
Our internet platforms help, listen, let people vent, and never pass judgement. We frequently provide support when there is no alternative option for assistance. Many of us believe the system, which includes diagnosis, treatment recommendations, and support, has failed us. Unfortunately, the NHS doesn't always offer treatment or support.
The goal of the L-W-O Community is to support our members, to advocate for themselves, and to make educated decisions. We could create fact sheets; this website shares information based on lived experience. We educate, enlighten, and raise awareness about lymphoedema through our website and social media.
Remember I am a patient; I learn as a patient, I read as a patient, I speak as a patient, and I write as a patient. Be part of our community so that together we can...
Amplify your Voice
How to join L-W-O Community Support Group
The L-W-O Community is a patient-led community that provides non-medical guidance and support. including the following:
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Self-care guidance
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Patient support
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Trusted Information
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Find a specialist
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Digital Tools
To join the L-W-O Community's online lymphoedema support group, you can access the Facebook support group, which is a welcoming and moderated space for individuals with lymphoedema to connect and share experiences.
For security purposes, when requesting to join our Facebook support group, you will be asked the following questions:
Question 1
Do you or a member of your family have Lymphoedema/Lymphedema? Please tell us which type of lymphoedema.
Question 2
By joining the L-W-O Community, you agree to our terms & conditions & acknowledge our medical disclaimer? You understand any form of self-promotion will result in a member being removed.
Question 3
You are aware that we receive no formal financing, so we conduct fundraising campaigns on occasion to pay the costs of administration, content creation, graphic design, video production, and website management. Subscriptions are voluntary.
Please note that Facebook may display these questions in a different order, and you may also see a prompt asking you to agree to the group rules before you can continue.
Lymphoedema Empowerment
Patient‑Led Support for People Living With Lymphoedema
L‑W‑O Community is a lived‑experience organisation offering practical, emotional, and educational support for anyone affected by lymphoedema. Everything we do is shaped by real people, real stories, and real day‑to‑day challenges.
Our empowerment tools include:
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A friendly, welcoming online support group
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Clear, accessible self‑care information
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Guidance on compression, skin care, movement, and emotional wellbeing
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Visual resources and infographics designed for easy understanding
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Advocacy and awareness across the UK
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Trusted information created by Gaynor, who is PIF TICK accredited
Our aim is simple: to help you feel supported, informed, and connected wherever you are on your lymphoedema journey.
Please note: L‑W‑O Community does not offer medical advice, and I am not a healthcare professional. We encourage all readers to review the medical disclaimer located at the bottom of every webpage.
When L‑W‑O does not have the answers, you may be signposted to another organisation for further information.
Registered Trademark
Over the past few years, I’ve experienced many highs and a few lows, though thankfully the lows are now rare. However, I still feel troubled when others use my work without acknowledging me or the L-W-O Community. Recognition matters, not for praise, but because it honours the effort and purpose behind what I do.
For many years, I’ve considered how best to protect my intellectual property, and at the end of July, I finally took that step and applied for a registered trademark.
L‑W‑O Community stands proudly under its registered trademark LWO L‑W‑O COMMUNITY® LYMPH‑WHAT‑OEDEMA, a name that reflects both our identity and our mission: to make lymphoedema visible, understood, and supported. Lymphoedema exists, and we exist, as a community, as a voice, and as a place where people living with this condition can find connection, clarity, and comfort.
Our trademark represents three pillars of service that define who we are:
Online Forums & Discussion Boards Class 38
At the heart of L‑W‑O Community is a warm, welcoming online space where members can talk openly about their experiences. Our forums offer peer support, shared learning, and a sense of belonging. People living with lymphoedema often feel isolated; our discussion boards help replace that isolation with understanding, encouragement, and genuine community.
Education and Publishing Class 41
We are committed to producing clear, accessible, patient‑centred information. Through our website, articles, guides, and digital resources, we help people understand lymphoedema, lymphatic health, and the practical realities of daily self-management. We ground everything we publish in lived experience and shape it with our belief that knowledge empowers.
Health & Self-Care Support Class 44
L‑W‑O Community champions a holistic approach to lymphoedema. We recognise that it is more than swelling, it affects emotional wellbeing, confidence, mobility, and everyday life. Our support encourages self-care, resilience, and positive lifestyle habits that help people feel more in control of their condition.
Together, these elements form the foundation of our registered trademark and our purpose. L‑W‑O Community exists to support, educate, and uplift everyone affected by lymphoedema, because when people understand their condition and feel supported, they thrive.
"I could never have imagined the journey ahead of me"
Gaynor Leech Founder of L-W-O Community is proud to hold memberships or be affiliated to the following organisations with the aim of encouraging Patient Empowerment and Community Engagement.
Meet The Team
Gaynor Leech
Founder of L-W-O Community, Lymphoedema Patient Advocate, Trusted Information Creator, Self-Care Champion, Author, Blogger, Patient Representative European Patient Advocacy Group
Breast Cancer Survivor.
My initial diagnosis was breast and posterior chest wall lymphoedema. However, in 2021 I was further diagnosed with significant lymphoedema to my torso and upper waist.
Sue Sanders
Facebook Moderator
Sue has lymphoedema in her right arm, breast and torso following treatment for breast cancer in 2015/16. Now retired from teaching she particularly enjoys walking.
Sue joined L-W-O in January 2017.
Sue is a moderator on our Facebook Support Group.
Jackie Wingate
Facebook Moderator
"I was diagnosed with breast cancer in 2017, after mammograms and scans. Unfortunately, l developed lymphoedema & now have to wear a made to measure compression sleeve and glove. At least I'm still here to annoy my husband. Jackie is a moderator on our Facebook support group."
Voluntary Subscription
How can I join L-W-O Community's online lymphoedema support group?
To join the L-W-O Community's online lymphoedema support group, you can access their Facebook support group, which is a welcoming and moderated space for individuals with lymphoedema to connect and share experiences. The L-W-O Community is a patient-led network that provides non-medical guidance and support.
Most of their resources are freely available, but they also offer an exclusive subscribers' group for a small yearly fee starting from £5, giving access to additional resources.
You can find their Facebook support group by searching for "L-W-O Community" on Facebook or visiting their official website for links and more information.