header photo

L-W-O Community

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

What is Community?

Author: Gaynor Leech, Founder of L-W-O Community


When I first launched the website and Facebook page in 2013 the Facebook page generated quite a lot of interest and people who visited started to post some very personal details about lymphoedema.  Encouraged by my friends from what was then the Walsgrave Lymphoedema Support Group who suggested I needed to start a closed/private support group.  I smile now at the difficulties that first created because I simply did not have the skills or knowledge on how to do this.  It took me eight months to work out how I could set up an online support group and finally launched the Support Group on 14th May 2014.  Little did I know then of how we would grow.

Recently I was asked by a member of L-W-O Community’s Support Group:


“Would I be clearer with what I meant when referring to a community?"



Initially I thought I could answer this quickly and started to type my thoughts and decided that to me my definition was quite simple but the more I thought about the question the more I realised to others it might be questionable.  One paragraph became a blog.  This prompted me to remember a meeting attended by me in Coventry in 2014 and a similar question was asked.  “What is meant by ‘Community”?  This meeting was made up from Health Care and Social Care Professionals and at the time I was very much out of my depth. Each member gave their answer and when it came to me, I said, “Online Community”.  The horrified silence was enough to have me running for the door, thankfully there was no easy access. Ninety per cent of the room vehemently disagreed while the remainder did not disagree however, it was clear from the look on their faces at that time it was something they did not think was possible.

My Dad would often say to my Mum when I was growing up “How many times do I have to tell you, do not say to Gaynor she cannot do something”.  In my life I have dealt with many challenges, the main difference now is I probably think about tasks more before tackling them, that means I do not get into trouble quite as much.  From the early meeting in Coventry, I probably subconsciously said “Yes you can create an online community”. However, the idea was not consciously formed until 2016 when L-W-O’s message was simple:


“Raising the profile of lymphoedema and bringing together those living with this condition.”


From 2016 we have developed, grown, and accelerated through 2020/21 and L-W-O Community has embraced working online, as have businesses, charities, organisations, and people from all walks of life.  Over the years we have provided more visual content and clearly defined who we are.


In the Community or Online Community?


Going out into the community with an information stand where you give out information and leaflets while chatting to those that visit your stand means that you reach fewer people, and some people will walk away simply because you are chatting to someone else.  Anyone who has ever been involved with conferences, exhibitions or open days will tell you that it is great to meet the public and talk to people, but they are long, exhausting days in which you spend a huge amount of time organising and preparing to attend.  Are these events cost effective?  We are lucky as a small group that the days out we have attended pre-pandemic only cost us travel expenses and occasionally subsistence costs and we rarely paid for floorspace, stands or cubicles.  Exhibiting can run into thousands of pounds and therefore this would not be feasible for L-W-O Community.

On the other hand, an online community like our support groups allow the user to be anonymous if they wish but provides for interaction with likeminded people and some of our members have met with each other and become friends.  An online community can be fickle and requires constant community engagement with posts being acknowledged instantly.  Failure to do so means your audience loses interest and simply disappears.  However, I still believe that this is one of the most effective ways to reach your audience.

Over the last seven years we have moved from being told there is “no place online for a support group”, to being highly respected within the lymphoedema community.  L-W-O has now established a clear identity of its own and evolved into its own recognisable online community which I thank you all for being part of.

The education and knowledge we gain from each other should not be underestimated and importantly we have retained most of our members.  We are a positive friendly group providing a place to chat to others who live with lymphoedema.  To be supported, not judged, and to give our members a voice.  This is what I call a community.


If we as a community don't step-up to help each other.

Then who will?  Kathy Grimes




Go Back