About L-W-O Community
I live with Secondary Lymphoedema
Hi, I am Gaynor Leech and I started L-W-O Community in September 2013. I have lived with Secondary Lymphoedema since May 2011.
The original website and Facebook Page was started with the name L-W-O which stands for Lymph-What-Oedema. However, as we have grown adding more social media and a family website for parents whose children are born with lymphoedema or a lymphatic malformation, it became clear that L-W-O was developing its own community.
For those of you that are familiar with L-W-O Community you will know my story and how I became a patient advocate, something that did not happen overnight. There have been many bumps along the way. For those who do not know my story here is the shortened version.
Late 2010 I was diagnosed with Breast Cancer found through a routine Mammogram. My breast cancer was not a lump it was in the tissue it would not have been found without the mammogram at such an early stage. To all intents and purposes my long-term prognosis was good, I had a small operation to remove the offending tissue and 15 days of radiotherapy to mop up any remaining cells.
At no time was I told that the radiotherapy while killing off the cancer cells would cause another problem and I would end up being diagnosed with the lifelong and incurable condition of lymphoedema. At the time of my diagnosis there was little help, support, or information that would help me understand my new diagnosis. Disbelief and anger, I felt doomed. Anger turned to a passion to improve not only my life but the lives of other people who were diagnosed with lymphoedema.
How we Evolved
After being diagnosed with lymphoedema, I spent two years researching and learning about my condition and without meaning to, I had identified a need for more support in the UK. At that time, there were a couple of small online support groups for lymphoedema.
For me personally, I have found this whole journey has been a steep learning curve, from the early days of gathering information after my diagnosis in 2011 to publishing the website and community page in September 2013, followed by our online support group in 2014 and other social media platforms.
Now wherever you live in the world it is those of us that live with lymphoedema who have organised ourselves to support each other. Between us globally we can operate 365/6 days of the year 24/7. Sometimes it is as simple as having someone else to talk to who understands how we feel.
Our online platforms give support, we listen, allow a rant, and never judge. We offer support often when there is no other help available. Many of us feel the system from diagnosis to treatment plans and support have let us down. Sadly, treatment is not always available on the NHS.
L-W-O Community's aim is to encourage our members to make informed choices and encourage them to become their own advocates. We could produce fact sheets however with this website and our family’s website you will find the information all in one place. Through our online posters and presentations, we can educate, inform, raise awareness of lymphoedema.
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. We do not charge for our services; however, we do ask for donations for the upkeep of this website and our family website and the work we do across social media and in the community.
L-W-O Community shall work to promote awareness of lymphoedema to raise the profile of the condition.
Our aim is to support and reach as many people as we can who live with lymphoedema.
Through this website our two other websites www.lymph-what-oedema.com and our family website www.lwoccommunity4families.com we will provide information that promotes the well-being of lymphoedema patients.
L-W-O will not offer medical advice but will signpost to those organisations that are more qualified.
L-W-O will regularly review and update our website.
Through our 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.
L-W-O Community will work with other lymphoedema organisations or public organisations when it is in the best interests of our members. Our aim is to encourage community engagement.
Where necessary and appropriate L-W-O will represent the views, concerns, and interests of our members.
L-W-O will always act in the best interests of our members, remain non-political, and will resolve issues among our members through democratic process.
L-W-O are aware of our responsibilities for safeguarding confidentiality and preserving information security for L-W-O and our 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.
Meet The Team
Founder of L-W-O, Lymphoedema Patient Advocate, Self-Care Champion, Author, Blogger, Patient Representative European Patient Advocacy Group
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.
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