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L-W-O Community

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

Lymphoedema Social Media Community

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



Lymphoedema Social Media Community


“Who else needs more awareness training?”


This week on Twitter Dr Melanie Thomas tweeted the above question.  The tweet was about raising awareness of lymphoedema education benchmark statements for lymphoedema specialists around the UK and sent to ILF (International Lymphoedema Framework) Cheryl Pike Lymph Innovate, and BLS (The British Lymphology Society)


This woke up the old grey cells and really got me thinking about the involvement so many people have with the LSMC.


Let me explain that LSMC’s are not a collective movement, each operate separately, each have unique qualities, they support Primary Lymphoedema or Secondary or both.  There are those that are gender specific and those that represent both.  The top seven LSMC’s in the UK on Facebook closed support groups have over 6,000 members, there are smaller groups aimed at local areas and I haven’t added these in.  Twitter is hard to quantify as is Instagram.  Twitter is a combination of businesses related to lymphoedema, HCP’s and those living with lymphoedema.  Instagram is a fast-growing forum with a younger following with the largest age group range between 25-34 all living with lymphoedema.

Those that run a LSMC all live with lymphoedema, and running these groups is a real challenge because of their own health issues, fatigue, rubbish days the constant battle to get treatment whether it be physical or for mental health problems.  As one of my friendly acquaintances recently stated, “nobody knows how tiring it is running these groups”.  

We are an asset to the lymphoedema community, occasionally we receive verbal abuse, when we get it wrong, we get told.  While the verbal abuse it unacceptable, when we get it wrong then none of us mind if we are then given the correct information but for this, we need HCP’s to work with us and not to dismiss the role we have.  I must give credit here to LSN (Lymphoedema Support Network) and especially Karen Friett who works with us, when appropriate.  The growth of LSCM’s has been phenomenal and I suspect it has left many HCP’s perplexed at our rise.  Our members are trying to understand their lymphoedema and as each group encourages their members to become ‘expert patients,’ or their own ‘advocates,' it does cause unnecessary conflict.  

Therefore, those that run a LSMC also need support, we are at ground level giving support to our members and raising awareness 365/6 days a year often available 24/7, none of us are paid, we are all volunteers.  We need support from the wider lymphoedema community, just think what we could achieve if we all worked together and where appropriate be invited to attend training courses that aren't financially outside our reach.   

Back to the original question;


“Who else needs awareness training?”


We do


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