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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

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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 very little psychological help for those of us living with lymphoedema.   A support group like L-W-O is invaluable to those of us living with this condition.

 

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 very 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. 

www.facebook.com/groups/lymphwhatoedema

 

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Please donate

L-W-O does not receive any funding and relies heavily on donations, we keep our sites advert free but to do this we rely heavily on the donations of our members, followers and supporters. We need to raise £1000.00 per year for the upkeep of our website, promotional materials, insurance and community work. L-W-O is voluntary and none of our volunteers gets paid including our Founder.  Please support the work we do in raising awareness, providing information and supporting those of us who live with Lymphoedema.

L-W-O objectives 2019

Welcome to L-W-O every year as we grow we set new objectives. Below are the objectives for 2019

  • Create a community that brings people together for a common cause and shared interest in lymphoedema
  • Promote self-care and positivity
  • Share stories about the lives of those living with lymphoedema
  • Share new research, campaigns and debates from the lymphoedema community
  • Voice loud and clear

Lymphoedema exists, we exist

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

 


Page first published September 2013

Page last updated 18/09/2019