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.
The acronym L-W-O stands for lymph-what-Oedema. The name will remain the same, but as we grew, I felt that changes needed to be made.
In 2021, we 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 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 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
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 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.
Now, wherever you may be in the world, people who have lymphedema 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 L-W-O Community is to support our members in becoming their own advocates and to make 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...
Our Vision is for Patient Empowerment & Community Engagement
The L-W-O Community is a non-profit group established in September 2013. Our mission is to support individuals living with lymphoedema or a lymphatic malformation. Although we are based in the UK, our community has a global following. It’s estimated that over 400,000 people in the UK live with lymphoedema. We offer non-medical tips and advice to our members, helping them manage their condition effectively.
Our goals include:
-
Bringing People Together: We create a sense of community by connecting people who share an interest in lymphoedema.
-
Promoting Self-Care and Positivity: We encourage positive attitudes toward managing lymphoedema and emphasize self-care.
-
Advocacy: We empower individuals to become their own advocates in dealing with lymphoedema.
-
Sharing Stories: We share personal experiences to foster understanding and empathy among our members.
-
Disseminating Information: We keep our community informed about new research, campaigns, and debates related to lymphoedema.
-
Raising Our Voices: We boldly declare that lymphoedema exists and that we, as a community, exist alongside it.
Remember, lymphoedema is manageable with the right treatment, and our community aims to provide valuable support and resources.
If you want to learn more, please browse this website: Join our mailing list or purchase a voluntary yearly membership to help us continue to provide important information.
"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."