Menu
header photo

L-W-O Community

Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Welcome to L-W-O

Page Counter

554512

About Me

Hi, I am Gaynor Leech and I started L-W-O Community in September 2013 having lived with Secondary Lymphoedema since May 2011.  Originally it 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 I decided to work on creating a 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.  For those who do not know my story here is the shortened version.

Late 2010 I was diagnosed with Breast Cancer 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.

I was not told was 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. My anger turned to a passion to improve not only my life but the lives of other people who were diagnosed with lymphoedema.

"I could never have imagined the journey ahead of me".

 


How we evolved

After being diagnosed with lymphoedema, spending time researching and learning about my condition, I had identified a need for more support and in the UK, there were a couple of small online support groups.  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, 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. 

 

Our Timeline

L-W-O Community HealthUnlocked

Our online community

Research shows that people with long-term conditions who take more control of their health feel more able to cope with their health problem, have better pain management, fewer flare-ups and more energy

 

L-W-O Community

Raising awareness through online posters and presentations


This website is dedicated to all of you living with the lifelong condition of Lymphoedema.   See our disclaimers as the bottom of the page. 

Do you need support?  Why not join our Private Support Group 
 

Page first published September 2013

Page last updated 01/04/2021