This year marked the tenth anniversary of the L-W-O Community, and what a remarkable decade it has been! As a survivor of breast cancer who is also living with lymphoedema, the need to comprehend this condition and acquire coping mechanisms was formidable. Much like many of us who have been diagnosed with lymphoedema, I was initially overwhelmed.
Reading, researching, writing, and, most importantly, listening to others with lymphoedema for over a decade have been essential to my coping strategy.
The countless hours I have devoted since the inception of "lymph-what-oedema" to the development of a patient organisation with a worldwide presence have been amazing. Without our followers, members, and supporters, the transformation and expansion into the L-W-O Community would not have been possible. Although the past decade has been filled with many experiences and highlights, 2023 has surpassed all expectations.
This newsletter will feature an account of our accomplishments for the current year, as well as an acknowledgement of the individuals who have provided support for me personally and the L-W-O Community.
I continue to work with and write for Mary Fickling and the PhysioPod UK Ltd News Magazine, and I am always astonished by her energy and excitement for helping others. We have worked together on World Lymphoedema Day which is held on March 6th and Lymphoedema Awareness Week for the past three years. Our theme this year was the importance of Self/Simple Lymphatic Drainage in lymphoedema management and the rising influence of the patient voice. Mary and I are both passionate about giving those who live with lymphoedema a voice. This year’s aim is to strengthen the goals we set last year. We are firm believers that self-care is essential for improving lymphatic health. We have both devoted considerable efforts to enhancing the accessibility of our work through the incorporation of closed captions, subtitles, and additional visual aids. At an individual level, this necessitated dedicating a substantial amount of effort to verifying the accessibility of the L-W-O Community website.
A long-overdue thank you and apologies to Juzo UK's Ross Summers. At the October 2022 BLS Conference, Ross and I discussed hand compression. His exhibit had compression gloves that I tried on. Ross generously sent me the classic seamless compression glove to test at home, and I volunteered to write a brief review. Due to unforeseen circumstances, I was unable to keep my word. However, finally, I have written a short piece, and I am delighted to say I am still using the glove. For a decade, Adam Withey from Juzo UK has supported our community and provided individual support to group members. I appreciate this so much, and on behalf of my members, thank you, Adam.
European Patient Advocacy Group
I have been serving as a patient representative for the European Patient Advocacy Group on a volunteer basis since 2019. Our manifesto has had global success as a call to action to raise lymphoedema awareness in the UK and Europe. I attended a Zoom conference with European patient associations this year, and we were joined by Swedish Health Minister Acko Ankarberg Johannson. The Minister agreed to convey the manifesto and the associations' concerns to her colleagues at the Council of the EU on lymphoedema care and treatment. Sweden held the presidency. In addition, this year the group launched a new website, ‘putting compression under pressure’ which was presented at the ILF Conference in June by Eline Hoogstra from the Netherlands. I was thrilled to meet Eline in Nottingham in June for the ILF Conference; before that, our communication had been limited to email and Zoom.
International Lymphoedema Framework Conference
This year I was also invited to be a patient representative on the conference board for the 11th International Lymphoedema Framework (ILF) organised in collaboration with the Lymphoedema Network Wales. My friend Susie Murray has been instrumental in enabling this and providing me and L-W-O with support over the past decade. I was invited to attend the conference as a delegate, which spanned an incredible two days in June. The presentations in the main hall and side rooms provided me with a wealth of knowledge. Moreover, I had the opportunity to meet in person with a significant number of individuals with whom I had previously only interacted via social media. The patient day was a resounding success, and attendees were given the chance to pose questions to the speakers.
The British Lymphology Society
I have worked with the British Lymphology Society (BLS) for several years, writing occasionally for their quarterly magazine. We collaborated in 2021 to create videos for the BLS 'Every Body Can' campaign as part of a cooperative effort that aligned well with the L-W-O Community's philosophy of encouraging movement as opposed to exercise. I am forever conscious that while we have super fit members, we do have members with limited mobility, and we need to ensure they are included in every aspect of our information sharing, tips, and advice.
In 2022, I was delighted to be asked to work with the BLS alongside their trustees and Matt Hazledine from Lymphoedema United. Understanding the Patient Agenda was presented to attendees at the conference in October 2022 via five workshops. This work was a tremendous success, and we agreed after the conference to expand on it.
The theme for 2023 is ‘The Importance of Patient Involvement in Shaping NHS Services’. We created two patient fact sheets, which were presented in two speed sessions at this year's conference. This year, we were delighted to welcome the Lymphoedema Support Network to the BLS Patient Project team 23/24. By working with patient associations, BLS aims to encourage lymphoedema clinicians to engage with patients when shaping service development. While I will always advocate on behalf of those of us who live with lymphoedema, working with the BLS has given me a better appreciation of the pressures many of our lymphoedema practitioners are under.
This year's BLS conference was a tremendous success, and Matt Hazledine and I shared an exhibition stand. This allowed us to converse with a lot of the delegates, and the five sessions we conducted in 2022 have generated an abundance of positive comments. There were two highlights for me. The first was hearing Stanford University Professor Stan Rockson discuss the HEAL trial.
The second highlight was meeting Beverley de Valois, Acupuncturist, Author, Researcher, Lecturer, Scar Work Therapist. Beverley and I talked about the false belief that many patients have regarding the use of acupuncture being contraindicated for people with lymphoedema. Another myth. If you avoid your affected area, then acupuncture is beneficial. I had tried to book into the sessions Beverley was holding, but they were oversubscribed. During our conversation, Beverley cordially extended an invitation for me to attend the final session of the day. As soon as I underwent ear acupuncture, I felt an immense sense of relaxation. Beverley has written an article for the next News and Views, and I was happy to contribute a couple of paragraphs on my experience.
You Are Not Alone
Matt Hazledine contacted me in late 2022 to ask if I would be interested in writing a chapter for a new book he was compiling with Amy Rivera, who is a patient advocate from the United States. Of course, I agreed. Thirty-four lymphoedema patients from fourteen different countries joined Amy and Matt in demonstrating to readers that living a full life with lymphedema is possible. Each contributor's story began with their national flag and a quote. My quote...
“I believe you can accomplish whatever you feel capable of.”
Contributors were asked for their top advice after each chapter. My suggestion:
“Learn to understand yourself and what works for you.”
Physical and emotional health might be negatively affected by lymphoedema, but this book, "You are Not Alone," demonstrates that despite the lack of understanding of lymphoedema in our different healthcare systems, we have all learned to advocate for ourselves as individuals.
We are in a unique position to describe what it is like to live with lymphoedema, including the daily routines and constant need for self-care. Our focus has been on lymphatic health, self-care, the patient voice, and ensuring that our voices are heard; community engagement has been of equal importance. I am proud that we have been able to convey the idea that outcomes may differ among individuals and that what is successful for one person does not necessarily apply to another.
L-W-O’s achievements would be unattainable in the absence of our members, followers, and supporters. They are the reason I continue to advocate for the amplification of their voices, and I feel that our voices will not be heard if we do not work together as a community. I thank all the above for their continued support, and I look forward to working with some of you in 2024.
My personal gratitude goes to our two support group moderators, Sue Sanders and Jackie Wingate, who welcome and support new members. The time they devote to our community frees me up to work in the background to spread our message: Lymphoedema exists; we exist.
On a personal level, it’s been a tough year with several health issues, including a serious sight problem that was thankfully resolved, plus two stays in the hospital and an operation on my sphenoid sinus. We are forever grateful for having a large family. One granddaughter got married, two more grandchildren passed their driving test, two are enjoying university life, one has become a PCSO, and two are in retail management. The two youngest are happy and content, and I love seeing our two great-grandchildren. Importantly, I have the support of my ever-patient husband, who has had to do a lot more chauffeuring this year.
My main concern is how I will continue to support the L-W-O Community financially. In the early years, it cost £250 per year to run, but this year our costs have skyrocketed to £1500, with me footing 25% of our costs. So, if you like what the L-W-O Community accomplishes for you, please support us. No amount is too small. You may either donate through our GOFUNDME page or sign up for a once-a-year membership to help me continue to raise the voices of individuals affected by lymphoedema.