Our 2023 campaign for Lymphoedema Awareness Week is completed and our feedback survey is open. Previous campaigns can also now be viewed here > 2021 2022.
This year the PhysioPod and LWO Community joint campaign focussed on the importance of simple/self-lymphatic drainage (SLD) in Lymphoedema and the importance of the Patient Voice. Our survey was completed by those living with Lymphoedema and their Practitioners. We had a clinical response to the survey from Sue Hansard, Lymphoedema Nurse Specialist. LWO Community also conducted an additional poll within their private support group, on whether patient were trained in SLD when they were diagnosed.
We also twinned World Lymphoedema Day with International Women's Day (IWD), which fell within two days of each other, to celebrate women who have made a difference in the lives of others in the Lymphoedema community. We initially had the idea to give patients the opportunity to publically thank their Lymphoedema therapists. But it soon became apparent that many also wanted to thank Lymphoedema educators, fundraisers and patient advocates. Sixteen videos were created from the information we received. You can see all of the International Women's Day videos tributes here. It was lovely to receive feedback from those nominated and to know this initiative was appreciated.
Gemma Levine, photographer, who has raised £50,000 for Lymphoedema Research at St. George's Hospital Charity emailed in:
"Dear Mary,
I have had so many very complimentary messages from your video. You are an amazing lady to be doing this. It has to be the best method of raising awareness. Personally, I can’t thank you enough.
So many people are ignorant of the fact that I have put my whole ‘being’, heart and soul into my books and events, which I create, and have put on annually over the last decade, for raising awareness and funds into Research. Gemma"
Gemma in this video, is written about through the eyes of Dr Miriam Stoppard:
Christine Wise, Independent Lymphoedema Specialisst
"It was a great thrill and honour to receive a mention. Lymphoedema is such a distressing and often debilitating condition and I am only one of many therapists who are committed and dedicated to improving the quality of life for patients with this condition. However, I feel a special thank you and mention, must go to you both as without your commitment, motivation and enthusiasm with *Deep Oscillation and bringing this wonderful piece of equipment to the UK, many therapists and lymphoedema patients would not be able to manage their condition as effectively as they do."
Pernille Henriksen European Patient Advocacy Group (ePAG) for the Primary and Pediatric Lymphoedema Working Group. (PPL WG)
"Thank you so much for your kind words. I am very honoured to share this journey with you and work for improving the patient outcomes"
Did you know?
'Lymphoedema affects around 430,000 people in the UK' (Source BLS).
With Lymphoedema, swelling (oedema) is most commonly found in the arms or legs, but it can also affect the face, head, neck, breasts or genital area following cancer treatment. Primary and secondary have different causes and you can read about the causes on the NHS website. Symptoms can include an aching, heavy feeling, difficulty with movement, repeated skin infections, hard, tight skin folds, wart-like growths developing on the skin, and fluid leaking through the skin.
Diagnosis/Referral & Treatment
Early diagnosis and referral for treatment are crucial, and many conservative treatment options can help reduce symptoms and improve quality of life. There are also surgical options, which include super microsurgical techniques and liposuction. Healthcare providers can assist with information and suitability for treatment.
*DEEP OSCILLATION®
DEEP OSCILLATION® is a non-invasive, non-traumatic treatment which is very well received by patients and is now often used in the clinical setting for Lymphoedema and Lipoedema and at home in self care with the personal unit. Clinically proven effects include significant pain reduction, anti-inflammatory, anti-fibrotic, detoxification, oedema reduction, haematoma reduction and support of the wound healing process. It is delivered via the vinyl-gloved hands of the Practitioner as a massage or special applicator/s, the biologically effective oscillations work in the tissue segment undergoing treatment to a depth of 8cm.
Pauline Bexon, Lymphoedema Patient talks about Deep Oscillation here
Support Groups
Alongside Lymphoedema Clinic support groups, we are lucky to have two great support groups in the UK.
Lymphoedema Support Network (LSN)
LSN has supported the Lymphoedema Community since 1991. The whole team at LSN show such dedication to raising awareness and helping those living with Lymphoedema and they are a pleasure to work with too.
We proudly included the new LSN SLD tutorials in the PhysioPod UK and LWO Community 2023 Campaign which can be carried out, though not essential, with their book "Lymphoedema - Taking Back Control"
LWO Community
Coming up for its 10th birthday this year, LWO Community, founded by Gaynor in 2013, is a simple, non-medical easy to read, site, that puts emphasis on self-care, with lots of valuable information about Lymphoedema and living with it.
Gaynor lives with Lymphoedema following breast cancer treatment and she set up the group when she discovered that there was little information around after her diagnosis.
She has gathered together some incredible signposting links here which lead viewers to Centres of Excellence, groups/associations and organisations, MLD Therapists, overseas Lymphoedema Practitioners, European organisations and resources for families of children living with Lymphoedema.
Lipoedema and Lymphoedema
Lipoedema is recognised by the Lymphatic Education & Research Network (LE&RN) as being part of the list of "lymphatic diseases" and quite often, Lipoedema and Lymphoedema co-exist.
Lipoedema UK write:
"In Lipoedema, the hips, buttocks, legs and sometimes upper arms, are out of proportion with the rest of the body. Many women describe their legs as being heavy, big, swollen and like ‘tree trunks’.
Unlike normal weight gain caused by over-eating or lack of exercise, Lipoedema fat often (but not always) can be painful or feel heavy and hurt when banged or scraped, even gently. It also can bruise easily and many women experience multiple frequent bruising. There doesn’t appear to be any correlation between size of areas affected and how painful it is"
My 'International Woman of The Year' - Gaynor Leech
I'd like to say a special and personal thank you to Gaynor LEECH.
Gaynor is such an inspirational lady. Over the years, we have shared some laughter, tears and sometimes frustrations, as we have put aside our time, to increase awareness of Lymphoedema, through our websites, work and campaigns.
Gaynor is funny, creative, kind and forever the diplomat; such a wonderful lady to have in my life! She also makes me see 'the other point of view" when I can't see it for toffee! For that, I am immensely grateful.
In recent months, Gaynor has struggled with health problems (sixth nerve palsy) and her eyesight and balance have been affected. Though she is slightly improved, Gaynor struggles to read for long periods of time, or to work at a computer, as her eyes tire very easily and she faces many hospital appointments in the months ahead.
And yet, Gaynor still tries her very best to help anyone who asks, and is doing so from her phone the majority of the time. This total dedication to the cause of helping those with Lymphoedema is what makes Gaynor my "International Woman of the Year". She might actually be "International Woman of My Life!'
Well, folks, it's been a great Lymphoedema Awareness Week for LWO Community and PhysioPod UK and our campaign has been shared globally.
Thank you to all those who contributed, and I do hope our efforts have made a difference in the lives of others, however small that difference may be.
We would love you to take part in our WLD campaign feedback, which will help us decide on our approach to a campaign in 2024. Thank you in advance!
