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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

 

Why set up a website?

The contents of this website pages are designed to give you the reader a reference to return to quickly without having fact sheets lying all around your home.  You can never find the one you need, and, in the end, you put most of them in the bin. I would like to think that L-W-O has done some of the work for you.  To make this easier some of our pages have the 'favourites button' which will allow you to save the page. Please remember everything is written from a patient’s point of view. Read my journey.

Lymphoedema has been around for a long time and I am totally frustrated by the lack of funding in the NHS for this growing condition.  Some of the NHS areas that have had funding, are now having their funding cut.  This is short-sighted.  Secondary lymphoedema receives more funding than primary lymphoedema. 

Please, always, consult your own health-care professional and read the medical disclaimer which appears on the bottom of every page. 

 

Contact Us

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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 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

Lymphoedema Abbreviations

We often use abbreviations when talking about the different aspects of Lymphoedema so these are the most likely you will come across.

LD -lymphatic diseases

LE - primary & secondary lymphoedema

LI - lipoedema

LF - lymphatic filariasis

LM - lymphatic malformations

LC - lymphatic continuum

Although a lot of people don't like the following terms you will come across them.

Lymphie - female living with lymphoedema

Lympho - male living with lymphoedema 

General Abbreviations

I find that when discussing certain aspects of lymphoedema we tend to talk in abbreviations therefore some of our newly diagnosed members aren't familiar with the terms we use.

AB'S - antibiotics 

DVT - deep vein thrombosis

​EPS - Electronic Prescription Service

MLD - manual lymphatic drainage

MLLB - multi layer lymphoedema bandaging

PALS - Patient Advice & Liaison Service

PMA - Positive Mental attitude

RLD - reflexology lymphatic drainage

SLD - simple lymphatic drainage

SE's - side effects

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 15/07/2019

 

05/08/2019