L-W-O Community

In 2010 I was diagnosed with breast cancer and considered myself lucky because my prognosis was good from the start. I had a small operation to remove the offending tissue and then my breast care surgeon recommended I had radiotherapy treatment just to be sure that there were no cancer cells still lurking.  At that time, I was more than happy to do this.  However, little did I realise that the radiotherapy treatment would leave me with a life long incurable condition known as lymphoedema.

Devastated by the diagnosis and being a person that needs to understand their conditions I researched lymphoedema for the next two years typing out notes and saving all the information on my laptop.  In September 2013 I realised I had enough information to start my first lymphoedema website and in the same week I opened our community Facebook page which is our public face.

When I started this journey that has totally changed my life beyond recognition I had no direction and no real skills but each day I learnt a little bit more and now we have grown into an organisation that has 3200 plus members, followers and supporters who live with lymphoedema or have a strong interest in the lymphoedema community.

Throughout 2015 and 2016 and I was still being asked by parents to set up a children’s support group.  At that time, I did not think I had the knowledge or experience to start a support group on my own because there are so many different aspects to paediatric or congenital lymphoedema. 

Late 2016 my great granddaughter was born with a lymphatic malformation (cystic hygroma) so it was time for more research. I spoke to Marie Barber whose daughter has lymphoedema and she agreed to come on board as Admin this gave me additional support and encouragement to set up our Children’s group.  In January 2017, our children’s support group was launched.

At the time, a website would not have been feasible, with lockdown 2020 social media and the internet have become an essential part of supporting, educating and raising awareness of lymphoedema.  Presently we have 98 members mostly from the UK, but we have an increasing global membership.

Founder of L-W-O, Lymphoedema Patient Advocate, Self-Care Champion, Author, Blogger, Patient Representative European Patient Advocacy Group

This page first published July 2020

Updated 24/08/2020