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L-W-O Community

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

August 2015

It is getting harder to find the time to write posts.  Never in my wildest dreams would I have imagined that my Lymphoedema journey would grow so quickly.  I now feel a real sense of achievement, proud that something I started is helping others with this condition.  My personal development and confidence has turned my diagnosis of Lymphoedema into a positive experience, even when I have rubbish days.

On September 13th this website and the community online page will be 2 years old.  I have just secured the hosting package for another 2.5 years, so we are not going anywhere.  The website has had 75,000 plus viewings and the online support group has 564 members. 

I have recently undertaken research on the support group asking "Do you have Primary or Secondary Lymphoedema"? It has been hard work but pleased to say so far out of those 564 members, 454 have taken part.  The results are interesting and not only did it give me an opportunity to re-connect with some of our members the information that some of them were willing to share was very informative.  Now I need to finish collating all the information and look at ways of getting it published.

Mid August I was accepted as an Affiliate of the International Lymphoedema Framework (ILF) this will give me access to the following;

  • reduced fees at conferences
  • regular updates on activities and resources
  • opportunities to network with National Lymphoedema Frameworks
  • opportunities to influence future activities and direction

"What does this mean"? ILF is a dedicated platform for the Lymphoedema Community.  The ILF objective: To improve the management of Lymphoedema and related disorders worldwide.

Diary of Events
Hospice Care Week 5th - 11th October 2015
International Lymphoedema Awareness Day Sunday 6th March 2016
BLS Awareness Week Sunday 6th March - Friday 11th 2016 Lymphoedema Awareness Day Wednesday 11th May 2016 hosted by myself and the Mary Ann Evans Hospice Nuneaton.​


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