About L-W-O Community
I live with Secondary Lymphoedema
L-W-O, short for Lymph-What-Oedema, was the initial name of the website and Facebook page. It became evident over time that L-W-O was becoming its own community as we expanded, adding more social media.
In 2021, we changed our name to L-W-O Community and unveiled a new logo.
Those of you who are familiar with L-W-O Community will be aware of my background and how I got to be 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 a 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 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
I spent two years learning about my lymphoedema after being diagnosed, and unintentionally I realised that there was a need for additional help in the UK. There were a few small online support groups for lymphoedema at that time.
From the early days of gathering information following my diagnosis in 2011 to the publication of the website and community page in September 2013, followed by our online support group in 2014 and other social media platforms, I personally have found that this entire journey has been a steep learning curve.
Now, wherever you may be in the world, people who have lymphedema have organised themselves to help one another. Together, we can run 365/6 days a year, around-the-clock. Sometimes all it takes is talking to someone who understands how we feel.
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.
The goal of L-W-O Community is to support our members in becoming their own advocates and in making educated decisions. While we could create fact sheets, you can discover all the information on this website. We can educate, enlighten, and raise awareness about lymphoedema through our online posters and presentations.
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 achieve...
Our Vision is for Patient Empowerment & Community Engagement
L-W-O is a non-profit patient association independently run by Gaynor providing non-medical support for those living with Primary, Secondary and Paediatric Lymphoedema. Although we don't charge for our services, we do ask for donations to support the upkeep of our website, our family website, and the community work we undertake on social media. Our vision:
To increase the condition's profile, the L-W-O Community will endeavour to raise awareness of lymphoedema.
Our goal is to assist and reach as many individuals with lymphoedema as we can.
L-W-O won't provide medical advice but will direct people to organisations with more expertise.
L-W-O will regularly review and update our website.
Through our Facebook community page L-W-O shall provide information for public use and continue to raise the profile of lymphoedema.
Through our online support group, L-W-O shall provide information, whilst supporting our members and their carers to discuss any issues they are experiencing.
When it is in the best interests of our members, L-W-O Community will collaborate with other lymphedema organisations. Our goal is to promote community engagement.
L-W-O shall reflect the opinions, issues, and interests of our members as required and appropriate.
L-W-O will always work in our members' best interests, avoid politics, and settle disputes among our members through democratic means.
L-W-O are conscious of our obligations to maintain information security and confidentiality for our organisation and its members.
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.