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L-W-O Community

For those living with Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Four Years Online

To this day I still don't know what my intentions were when I first started the website  I think when I look back it was intended to get my feelings and my anger at the lack of knowledge of lymphoedema on to paper.  It became obvious in those first few months that there was a demand for knowledge and support and for those of us that live with this condition to share our frustrations.  Did I expect lymph-what-oedema to see the phenomenal growth that it has achieved? Absolutely not!

We all face many challenges throughout our lives, we all experience anger, sadness, tears and luckily for me lots of laughter in our journeys.  Not once did I consider that the lymphoedema I had been diagnosed with the self-management and discipline needed to keep my lymphoedema under control would lead to a passion to help others living with the same condition.

There are still those that scoff at the use of social media, but without social media L-W-O would not have reached so many in the UK and beyond.  L-W-O has a very high social media presence, our Facebook support group is extremely successful.  The Community Facebook page is now growing and receiving up to 1000, viewings per week, depending on how much information we can share publicly. The website averages 1000 viewings per week, recently reaching 1200. Then we have LinkedIn, Pinterest and finally I have found someone to run a Twitter account for L-W-O.

Earlier in the year we started our children's group and appointed Marie Barber as our voluntary children's Ambassador.  Thankfully the growth has been slow and I mean this in the best possible way, I sincerely hope that there aren't that many children living with Lymphoedema.  However, we are there if needed and I hope our children's web page will evolve in the same way that the rest of the website has.

Two years ago, I was told that nobody would take an online support group on social media seriously.  That myth is well and truly busted and I now see more and more lymphoedema groups coming online.  Often people join the same groups looking for answers on how to self-manage their lymphoedema.  Thankfully the social media groups do not see a conflict of interest with all the sharing, unlike some local community groups who are either being left behind, playing catch-up or being hampered by their own short-sightedness.

Looking to the future we must find more volunteers, they are essential to our continued success so if you have the drive and passion to raise awareness of lymphoedema then come and join us.  You can email me Gaynor Leech at


​L-W-O raising awareness of lymphoedema

​September 2013 - 2017


Written by Gaynor Leech © 2017



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