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L-W-O Community

Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Welcome to L-W-O

Living with lymphoedema

Lymphoedema takes a while to come to terms with, as you do, the more positive you can be about your condition then the easier it becomes to live with.  Please remember that lymphoedema is manageable with the right treatment.

As far as I am aware there is little psychological help for those of us living with lymphoedema therefore an online support group is invaluable to someone living with lymphoedema. 

 

Anger to passion

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 groups.  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.

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. 

 

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L-W-O does not receive any funding, we keep our sites advert free but to do this we rely heavily on the donations of our members, followers, and supporters.  Our average earnings/expenditure falls below £1000 p.a.  The expenditure goes towards insurance, software, accounting, and graphics, stationary, printing costs, web hosting, domain names & relevant costs for community work.  No volunteer including myself receives a wage. We have partnered with Golden Giving as this will give us an option to receive donations, organise fundraising events and run raffles. 

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

 

Raising awareness through online posters and presentations


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

Page first published September 2013

Page last updated 24/05/2020