Volume 15 – April 2025

Welcome to our Fifteenth LymphUnited Newsletter, which includes a variety of subjects that aim to share experiences and help you to live better with lymphoedema.

Having lymphoedema can be a lonely place sometimes and I am passionate about uniting the lymphoedema community, both online and in person. You are NOT alone!

This issue includes a variety of articles including ‘Spotlight on Gemma Levine FRSA’, LymphUnited Regional Roadshows, Feedback from our Meet-ups plus winners of the SockShop Free Prize Draw

I hope you find this interesting and informative. Most importantly, I hope there will be something that you find beneficial to improve your quality of life.

Ultimately, this newsletter is for your benefit. Therefore, I welcome your feedback or any requests you have for future content.

Contact Matt at Hello@lymphunited.com.

Spotlight on Gemma Levine FRS

“My son says I’m obsessed with Lymphoedema!”

By Gemma Levine & Matt Hazledine

Introduction:

If you have lymphoedema, then you know that it can be life-changing in so many ways and can leave some people feeling down, depressed, isolated and alone.

After the initial period of anger, frustration, desperation and the unfairness of it all, comes acceptance. That can take months, years and sometimes not at all. Some people become motivated to become advocates, raising awareness of the condition and raising money for charity.

Gemma Levine is one such person, who I first met in May 2017 at her book launch of ‘Let’s Talk Lymphoedema’ written with Professor Peter Mortimer. I instantly warmed to Gemma’s passion, enthusiasm and her caring interest in other people’s experiences with lymphoedema. This started a new friendship, presenting many opportunities for us to work together since. I love Gemma and I’m sure you will too.

I am genuinely excited to introduce you to the formidable and wonderful Gemma Levine, who has made such a considerable contribution to the community.

“MY SON SAYS I’M OBSESSED WITH LYMPHOEDEMA” By Gemma Levine

Is he right, I asked myself?

Since ‘Lymphoedema’ is virtually an unknown disease and when I, myself, discovered I had it, soon after a breast cancer operation and since enduring a mastectomy, I asked the surgeon what was ‘lymphoedema’? He referred me to a massage therapist and handed me a leaflet. That was it! At that time, I had no idea what I was suffering from and the lifelong effects it would bring.

​Through the weeks that followed, of being treated by a therapist, I learnt a great deal about the suffering and disability that I was experiencing. Almost straight way I discovered I would never continue my career as a professional photographer after 40 years. I had to abandon my Hasselblad and Leica equipment. I had lymphoedema in my right arm only. It manifested in a huge swelling and I suffered severe aching, but not pain. I could not hold my cameras, or lift equipment. Therefore, gradually I became accustomed to the fact my career as a portrait photographer had concluded.

What was I going to do with my life? I was in my early seventies.

In discussion with my lymphoedema therapist, I asked her how could I possibly alert others who were suffering as I was, who knew little – or anything – about this problem? What sprang to my mind – I would write a book and, in the process, discover as many aspects as I could. She spontaneously responded, “you must meet Professor Peter Mortimer, he is the expert in this field”. He will guide you.

My most successful event was in 2024 at Claridge’s, I had an audience of 200 in the Ballroom at Claridge’s, Dame Judi Dench and her daughter, Finty, grandson, Sam, sat with actor Simon Callow, discussing theatre and life influences. Dame Joanna Lumley spoke, also reminiscing. The evening was a sell-out. Claridge’s donated the entire evening together with champagne, drinks and canapé’s. Professor James Levine organised video film footage throughout the evening, which went world-wide. Reaching quarter million people. THIS WAS AWARENESS. Through the success of that event, an anonymous donor pledged £5million for research. THIS WAS FUND-RAISING. The evening itself raised over £50,000. I was very proud of this particular achievement. In the 15 years I had voluntarily devoted my time and energy, I have raised £150,000 so far.

This year, 2025, I have organised in May, another event at Claridge’s. I invited Frances Segelman, famous sculptor, to sculpt a portrait of Dame Judi Dench in celebration of her 90th birthday.

I plan for it to be a grand occasion. I hope this will be an even greater success than the previous year. Time will tell!

I am currently in the process of producing a documentary on Lymphoedema with film maker Amory Leader, who I met by sheer chance, on a BA flight to Nice. We discussed the idea at which time he was unaware of Lymphoedema. Once he had agreed on the content of the documentary, our first inclusion was Dame Judi Dench, interviewing her dresser Jennie, who has Lymphoedema. Filming that followed, Dr Miriam Stoppard interviewed 4 other Lymphoedema patients, one of whom, is our ‘treasured’ Matt Hazledine. We included Professor James Levine discussing ‘rare diseases’. We are now planning to send the film crew to India. Professor Peter Mortimer will be writing the narrative and I invited Dame Joanna Lumley to be the narrator. We anticipate the documentary will be completed by the end of this year and shown on BBC TV. 

 On my final note, I was asked what advice I would give to someone who would want to be a lymphoedema advocate? 

This is not difficult to give straightforward thoughts. Very simply – Be passionate: Be sensitive; Be positive. Be creative with how to make an impact in order to communicate. If and when, you are approached by an Lymphoedema patient or sufferer, always listen carefully, allow the person to fully ‘unload’ before offering advice. Listening is sometimes more powerful than speaking.

It is ‘who you are’ and then, awareness will reach beyond boundaries. 

Gemma Levine FRSA 

Ambassador for Lymphoedema Charity at St George’s Hospital. 

Thank you, Gemma, for being such an inspiration to me and others living with lymphoedema. You are much loved and greatly appreciated. xx

To read more about Gemma’s personal journey with lymphoedema, please visit her on ‘Meet the Members’ lymphoedemaunited.com/meet-the-members/ and Meet the Celebrity Advocates (Gemma’s friends) lymphoedemaunited.com/meet-the-celebrity-advocates/

For more information about her prestigious fundraising events and her collection of books, visit gemmalevine.co.uk/

Lymphoedema United – New Regional Roadshows

You are NOT alone!

By Matt Hazledine

When I started Lymphoedema United, my three key objectives were, and are still the same today:

1. Raise awareness of lymphoedema and get more men talking

2. Help others to live better with lymphoedema, by signposting them to help and solutions

3. Raise money to support lymphoedema charities both in the UK and worldwide

The core areas of my website to achieve the second objective are:

1. Meet the Experts – Signpost to local lymphoedema Healthcare Professionals

2. Meet the Suppliers – Showcase products available to improve quality of life

3. Meet the Organisations – Signpost to trusted information – avoiding Doctor Google!

4. Meet the Members – Providing members stories to engage and form a community

Since launching Lymphoedema United and my first book in 2021, I have spoken to, or had emails from, hundreds of people who have reached out to me to discuss their challenges, with a vast majority of them feeling alone, isolated and desperately seeking solutions, medical help and someone who understands to talk to.

This gave me the idea to create ‘Lymphoedema United – You are NOT alone! – Meet-ups’ both in person (in the UK) and virtually via MS Teams enabling me to bring people together from all over the UK and in some cases, the world.

At each Meet-up, I ask each person to share their biggest challenge with lymphoedema and their Top Tip to help others. Unsurprisingly, the top five challenges are:

1. Cellulitis

2. Body Image

3. Clothes & Shoes

4. Holidays & Travel

5. Finding a local NHS lymphoedema clinic

The Meet-up provides the opportunity for the group to share their experiences and solutions to help others. I then ask the group for their Top Tips to help others and I am compiling a list of these, which I will publish in a separate e-bulletin soon.

Here are a few that I have gleaned so far from the long list:

1. Speak to your Doctor about prescribing antibiotics to keep on the shelf, in case you start experiencing early symptoms of cellulitis.

2. Don’t be embarrassed to engage with a psychologist, therapist or another person with lymphoedema to talk openly about how you are feeling. (Join a Meet-up session)

3. Ladies suggested ordering men’s pyjama/loungewear/jogging bottoms as they are wider/larger

4. If you have lower limb lymphoedema, you can apply to the airline for a seat with more leg room at no extra cost, by providing a medical letter from your GP or Therapist.

5. Use the BLS and MLD UK therapist register online, or call the LSN helpline. lymphoedemaunited.com/organisations/

If you would like to join us for a Meet-up, please keep an eye on your emails from me and check the website for more information of dates and venues. Virtual Meet-ups are via MS Teams. More dates are available soon for late 2025, 2026. lymphoedemaunited.com/whats-the-latest/

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