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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

The L-W-O Name

I was diagnosed with Breast Cancer in November 2010 and after going through an operation and radiotherapy I thought life would gradually get back to normal.  However, my breast and surrounding skin were beetroot red and the skin was very hot to touch.  I thought this was normal and that I was just taking longer than others to heal.  This is unusual for me as normally I heal quite quickly but then I didn't know any different, I hadn't had radiotherapy before.  When I had my routine check-up after radiotherapy I was informed by the Oncologist that I had lymphoedema.  I needed an appointment with a lymphoedema nurse specialist, urgently.  I vaguely remember looking at the doctor and saying:  

​"lymph what?" 

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. 

 

This website provides information that promotes the well-being and self-care of lymphoedema patients, giving non-medical tips and advice.  L-W-O recommends always that you contact your own health-care professional.  Please read the medical disclaimer at the bottom of the page.  

In May 2014, I was asked by those who visited the community page to set up a Facebook Members Support Group, this is a closed group and therefore more secure than the community page.  This allows our members to talk more openly about their condition.  I did wonder whether it would be possible to run a support group online, however, the support group has over 1100 members.   We have some lovely positive members who share information and support each other.  L-W-O continues to raise awareness of Lymphoedema.

Why not join our closed support group?

From September 2013 - January 2016 I funded the website, online support group and community page.  This cost me personally and financially became unsustainable  The hours I have devoted to L-W-O are incalculable. I do not receive a wage/salary.

With the help and guidance from Warwickshire Community and Voluntary Action (WCAVA) it was decided I would become a small independent non-profit.  This has been done to cover all the running costs and will give us subscriptions to other lymphoedema organisations and allows me to go to conferences that specifically relate to lymphoedema.  It will also help towards financing future events so that we can to raise the profile of lymphoedema and bring together those living with this condition in the community.

L-W-O is invited to several meetings and networking events that gives us an opportunity to work with other organisations who are interested in the raising awareness of lymphoedema. 

The L-W-O Journey

L-W-O has had an incredible journey and never would I have imagined in those early days that being diagnosed with lymphoedema would have lead me to creating a community to support other livings with this debilitating condition. 

Our website and Facebook Community page was set up in September 2013 and both are our public face.  The website is averaging 3000 viewings per week and our community page is reaching more people than ever who live with both Primary & Secondary Lymphoedema.  Why not take a look at our public community page which is open for everyone to see.

 

 

                      

 

Pictured above a few of our lovely members enjoying our Lymphoedema Awareness Day in May 2016.

 

Running L-W-O has led too many new opportunities and 2017/2018 were phenomenal years for our small group, I was invited to many events in the communities of Bedworth, Coventry, Nuneaton and Birmingham.

We now have a high social media presence with our Community page growing as are our Twitter and Instagram accounts, which means we have in the region of 2000 members, followers and supporters. Our growth never ceases to amaze me and I am humbled by the support that L-W-O continues to receive. Having being diagnosed with Breast Cancer, then further diagnosed with Lymphoedema was devastating however, my anger has subsided to a passion to raise awareness of lymphoedema so that nobody else will suffer the angst I did in those early days. If I help just one person live with lymphoedema then my journey has been worthwhile.

I am member of the British Lymphology Society, a member of Lymphoedema Support Network, Affiliate of  International Lymphoedema Framework and actively work across Coventry & Warwickshire and online to raise awareness of lymphoedema.

Interviews

In May 2019 I was interviewed by Grapevine Coventry & Warwickshire who have been extremely supportive of the work, challenges and growth of L-W-O this was how they wrote about me titled "From Self-doubt to Self-belief"

 

In March 2019 as part of World Lymphoedema Awareness day I had a conversation with Alexa Ercolana of The Lymphie Life, this was a new experience for me so have a read at my journey: