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L-W-O Community

Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Our Campaign

Lymphoedema Awareness Week (#LAW2021) in the UK and this year is 1st – 6th March 2021 and on the 6th  of March 2021 it is World Lymphoedema Day (#WLD2021). 

Whilst many patients and patient advocates before us have worked extremely hard to raise the profile of lymphoedema there has been a concerted effort over the last 5 years with many groups choosing to work together.

Late 2019 I was invited to join The European Patient Advocacy Group (ePAG) as a Patient Representative an association I am immensely proud to be a small part of.  This led to the first joint Manifesto of European Patient Associations in March 2020 with a call to action to raise the profile of lymphoedema in the UK and Europe.  The unexpected turn of events of 2020 as the world turned to dealing with Covid-19 meant our campaign fell flat.

However I am pleased to say the ePAG is thriving and this year 27 patient associations have been added to the manifesto and it has been translated into 11 languages.  In the UK I am proud to say L-W-O Community is involved as is our friends at Lymphoedema Support Network.

In an ideal world if patients, patient advocates, patient associations and lymphoedema organisations could work together we would raise the profile of lymphoedema improve the quality of care for lymphoedema patients educate the public and clinicians the latter who have little knowledge of the lymphatic system.

One of the most amazing aspects of running L-W-O Community is the amazing people I meet whether that person is one of our members or one of the many professional people in our community. One lovely person I became acquainted with in 2017 via Twitter is Mary Fickling Director of PhysioPod UK.  Mary has been a big supporter of ours, sharing our posts, sometimes offering advice, and becoming a valued friend. We met first in 2018 and had fun at the MLD Conference in 2019.  

I have written several guest Blogs for the PhysioPod website and in addition I have started writing for the monthly PhysioPod Newsmagazine.  In our many conversations we started talking about this year’s campaign for LAW and WLD and how we could work together.  We started working in January and decided we would make our joint campaign visual.  I sent Mary a slide presentation I did for use in the Community and she said, “hmm too long for a video I can make seven videos out of your presentation”.  To date Mary has made 14 videos using my words and writing.  I am absolutely thrilled with the results and although my poster/video skills are improving I could never have achieved the results that Mary has.  She has put countless hours into our joint video presentations, they have deliberately been made short and will be released from the 1st March 2021.  Mary, Julie, and I sincerely hope they will give anyone who watches them a greater understanding of what lymphoedema is and what it is like for those of us who live with lymphoedema.

 

Thank You

I hope you enjoyed last week’s campaign this is a roundup of those who did a video message supporting #LAW2021 #WLD2021 to the best of my knowledge everyone we invited to do a message or approve our posters did so.

The support Mary and I received has been amazing and we feel our goal to improve global awareness of Lymphoedema by sharing the 6 newsletters on 6 days, around the World, and by including information on the activities of others in the Lymphoedema Community has impacted on the success of the campaign.  As Mary's brother Simon, a retired Head Chef says "Teamwork makes the dreamwork".

 

 

How did we do?

L-W-O Community  and PhysioPod are collating feedback on the success of our Lymphoedema Awareness Campaign with a view to improving our 2022 Campaign.

Your participation in answering one simple question would be wonderful.

Thank you in advance, Gaynor Leech, Mary Fickling and Julie Soroczyn


Page Created 08/03/2021