header photo

L-W-O Community

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

New Year - New Decade

Author: Gaynor Leech, Founder of L-W-O

After a lovely long break, I will start to ease back into managing our community Monday 20th 2020 the break I needed for my own Wellbeing.  In this first blog of the New Year I will set out our future.

There are three of our members stories I wanted to tackle last year, but my health, stress, family commitments and time meant it wasn’t possible.  I will be contacting those members individually to follow up on their stories and see how we can tell their stories and share their experiences.

I realise finance is an uncomfortable discussion, and I have been investigating new and innovate ways in which we can raise much needed funds for L-W-O.  We receive no funding other than our members generosity through donations and apart from our monthly contributors’, funds are on the point of drying up.  Banks are making it tougher for small groups to operate and I am so thankful that our Treasurer’s account with Lloyds is working well as using PayPal is no longer an option.  Our PayPal account will be closed in the next two weeks.  If you would like to organise a coffee morning or other fundraising event on our behalf, please let me know.

Finding volunteers especially in the Coventry and Nuneaton area is a real challenge and limits our Community work.  L-W-O is looking for people who can spare 2/3 hours every three months, we need a pool of 8/10 people. The Community events we attend are good for networking but also have a social atmosphere this gives you the opportunity to meet some very nice people.  These events bring us into contact with people that don't have access to the internet.  Light refreshments are served by the hosts and car parking is free.

I also need online volunteers who can help research articles and people with design skills who can help promote our community.  There is a lot of information relating to lymphoedema, but I don’t post anything on our community if I haven’t read and understood an article sometimes this means reading an article several times.  Could you help with this?  Without more help we will standstill which means we are not giving support to our members and just as important we are not telling our stories to raise awareness of lymphoedema.

We were on the fringes of the Coventry & Warwickshire’s Year of Wellbeing in 2019 and I am happy to say the organisations year’s good work last year will continue as the organisation has become Coventry & Warwickshire’s Wellbeing for Life.  The countdown is now well and truly on for Coventry’s City of Culture 2021.  L-W-O will also continue to working on Self-Care for our members and to that end we have launched our Healthy Living private Facebook page which has currently 36 members.

Our Children’s private group has added new members over the last few weeks and we are beginning to understand better how Paediatric Lymphoedema and Lymphatic Malformations impact on family life.  I am proud that we have 72 families on board, and we have both European, UK, US professionals who understand Paediatric Lymphoedema.  Shortly I will be updating Ezmae-Kate's journey living with a Lymphatic Malformation and there will be new information on our understanding as a family of the procedures she is going through.

I have committed to nine events this year those will be Living Beyond Cancer for Macmillan and the Lymphoedema Symposium in Swansea.  As dates for conferences come up, I will be looking to see which are feasible for me to attend.  Sadly, we will not be organising our own Lymphoedema Awareness Day this year due the lack of volunteers.  I will also be looking to see how we can support Lymphoedema Awareness Week and to include our support for World Lymphoedema Awareness Day on March 6th, 2020.

Over the last five to six weeks I have had the time to take stock while there has been an incalculable number of hours gone into running L-W-O strangely it has also evolved sometimes taking on a life of its own.  There is now an acceptance that support groups and communities like ours do have a role to play in raising awareness of lymphoedema.  All this couldn’t be done without out members who also have a desire to understand their lymphoedema and how they can take charge of their own health.  Without our members, followers and supporters’ the need for groups like ours wouldn’t exist.

We still have a very long way to go but as 2020 gets underway I feel the optimism I had in the beginning has returned and I looking forward to moving our Community forward.



Go Back