Volume 18 – January 2026

Welcome to our eighteenth LymphUnited Newsletter, including:

• £4.8m DONATION To LYMPHOEDEMA RESEARCH

• LYMPHOEDEMA HACKATHON

• WHAT IS LYMPHOEDEMA?

• MEN DO TALK!

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.

Lymphoedema is a chronic and often debilitating condition characterised by persistent swelling and increased risk of recurrent infections due to failure of the lymphatic system. Affecting an estimated 250 million people worldwide, it remains one of the most neglected areas of medicine, with few treatment options and limited awareness among healthcare professionals.

This extraordinary donation will fund an ambitious, multi-year research and clinical programme at City St George’s, University of London and St George’s Hospital one of the world’s leading centres for lymphoedema and lymphatic disease.

The new funding will enable the expansion of cutting-edge genetic research, the development of new drug therapies, improved diagnostic techniques, and enhanced education and training for future lymphatic specialists.

A transformational moment for lymphatic medicine

The Lymphoedema Research (LYMRES) team at St George’s Hospital and City St George’s University has already discovered more genes causing lymphoedema than any other group worldwide. This donation will now allow the team to accelerate “bench to bedside” research—turning genetic discoveries into better care for patients. It will also strengthen clinical trials and sustain critical expertise within the service.

We had over 150 students apply, with 50 shortlisted into 5 interdisciplinary teams pitching for a prize of £1,000 – generously sponsored by Haddenham Healthcare. Students came from a range of disciplines, from medical and engineering, to social sciences. Together they brought different skills, mindsets, and curiosity to the UCL Innovation & Enterprise hub. The talent and energy was incredible.

In under a week, the teams went from “what is lymphoedema?”, to having a deeper understanding of the challenges surrounding lymphoedema and its care. Speaking directly to people affected by it, rapidly building early prototypes, and crafting a 7-minute pitch for their innovation to a panel of experts.

A week built around real lives

What was important (to me), was that the students would develop something that was realistic and would have genuine benefit to managing lymphoedema. So, it was important that the students were able to listen, learn, and ask questions from people with lived experience of lymphoedema.

Across the week, students took part in:

• • A crash course to the challenge with presentations led by me and Matt Hazledine
  • A “living library” session with the lymphoedema community – where students could ask honest questions and have in – depth conversations with Karen, Maxine and Carol from the LSN, Matt from LymphUnited, and Didi Okoh
  • A Q&A with industry and medical experts Tom Wright from Haddenham Healthcare and Dr. Bernard Ho from St. George’s Hospital.
  • An inspiring speech from Team GB Paralympian bronze medallist Didi Okoh – who showed everyone what resilience and determination look like.
  • A pitching showcase in front of a judging panel comprising of Me (UCL – LymphLabs), Matt Hazledine (LymphUnited), Karen Friett (LSN), Tom Wright (Haddenham Healthcare), Dr. Bernard Ho (St. Georges Hospital), and Didi Okoh (Celeb superstar).

What did the students come up with?

I was genuinely proud of all the students for how engaged and creative they were. Ideas ranged from a collapsable exoskeleton donning/doffing device to make wearing compression garments easier, to smart compression solutions including one that allows simulation of exercise to help those with limited mobility stay active.

The winning team was ‘Defying Gravity” (inspired the Jobst flyer), for their idea ‘Ati’ (named after an Egyptian princess believed to be one of the earliest depictions of lymphoedema over 3,000 years ago). An inclusive fashion platform that would solve the challenges around clothing, footwear and fashion faced by those with lymphoedema.

It was a unanimous win from all the judges. While there were more ‘techy’ and cool looking concepts that scored highly, Team Defying Gravity ultimately won for how they really considered the patient experience in their solution. They took every word from the living library to heart and implemented it in their solution. We were impressed with how thoughtful, practical, and rooted in lived reality it was.

The solution centered around an app that would bring together scattered practical support into one platform – linking services like tailors, adaptive clothing retailers, odd shoe suppliers etc – so people can search by either what they need or where they live (postcode) to find relevant options quickly.

The idea also included using anonymised search trends to understand unmet needs and then develop solutions to address the biggest gaps. As a first product concept, they suggested an adaptable underwear range designed for lower-limb lymphoedema, including options for asymmetric leg swelling, genital swelling, and bodies where leg measurements don’t align with standard waist sizing.

The winner of the pitch competition was a reminder of one thing: the best health innovation is one that puts the user experience at the heart of everything – by listening, translating, and collaboration – and being willing to build with the people you’re trying to serve.

The power of small steps to wider impact

I won’t go on about what lymphoedema is, and why raising awareness is important – you already know that story. So, I will talk about why it’s important to also focus on impact.

In academia, we often focus on ‘impact’ – the long-term effect on, change, or benefit to the broader society or economy that arises from research. Beyond traditional academic metrics like publications or how many people reference our work.

And sometimes that begins in a room full of people who didn’t know this condition existed, and leave the week unable to forget it.

I encountered lymphoedema in 2019 when my late uncle developed during late-stage cancer. I didn’t think much of this swelling beyond my shock at how he was dismissed. But my journey to becoming a little obsessed with lymphoedema started when I participated in a summer school hackathon that same year – not to dissimilar to the one I organised at UCL. There, in the cancer rehabilitation unit, I learnt just what a huge and overlooked problem lymphoedema was.

I left that summer school (shameless plug: I won first prize here for the early concept of LymphMotion) and returned to my PhD in orthopaedic trauma. But in the back of my mind, I kept thinking about this under-researched condition. When I completed my PhD in 2022, I was faced with a difficult decision. I had a job waiting for me in the established (boring – to me – but lucrative) field of orthopaedics, or dive in a completely different direction with lymphoedema.

I’ll let you guess which path I chose.

That summer school created a ripple effect – it led to me winning prizes, grants, and public communications opportunities that I’d never considered before in the name of raising awareness for lymphoedema.

Traditional health education and engaging students with our research is often passive, textbook heavy, and unimaginative in academia. While important, it doesn’t always inspire. If we want to create real change with tangible positive benefit, we need more out of the box approaches to get the wider public and next generation of innovators excited about tackling health challenges such as lymphoedema.

Because, impact can look quiet, but powerful.

• • A medical student who now recognises lymphoedema earlier,
  • An engineer who starts thinking about compression differently,
  • A designer who realises fashion can be a need in medical care, not just an afterthought,
  • A future founder who decides lymphoedema deserves attention and investment.

Here are some reflections by student’s post-hackathon:

“As a clinician, I often focus on treatment and management. But this hackathon reminded me how much we can miss when we don’t listen closely to the people living with these conditions every day. This gave me a new perspective on the everyday challenges and resilience of those living with lymphoedema”

 “What truly shifted my perspective, and that of our team, was listening to those living with the disease. We heard from two incredible advocates, Ndidikama Okoh and Matt Hazledine, who shared their lived experiences. Through their stories, it became clear that improving quality of life for patients can be just as important if not more so than focusing solely on treatment or cure.”

Innovation starts with an idea and collaboration:

This hackathon was and I quote from the UCL Student’s Union: “the event was such a success, one of the coolest events we’ve had”.

This event happened because a lot of people said yes to an idea – and helped shape it into something real. When I first approached the Student’s Union, LymphUnited, LSN, and St. Georges Hospital, I only had a brief idea with a simple aim: To raise awareness of lymphoedema by bringing together the next generation of problem solvers into the community.

I’ve always been so touched and inspired by how supportive the lymphoedema community has been throughout my journey. As Karen Friett from the LSN said “When she [Katherine] emailed asking for some help with a hackathon she was planning at UCL, we used one hand to Google hackathon and the other to say “Of course, what do you need?”.

With thanks to the many people and partners who made it happen:

The UCL Team:

• • Molly McCabe – liaison and organisational superstar
  • UCL Student’s Union
  • UCL Community Research Initiative
  • UCL Institute of Healthcare Engineering
  • UCL Innovation & Enterprise

Lymphoedema experts and judging panel:

• • Matt Hazledine and LymphUnited – the key partner of this hackathon
  • Karen Friett, Maxine, and Carol from the LSN – providing the patient perspective
  • Didi Okoh – our amazing celebrity speaker and lymphoedema advocate
  • Bernard Ho from St. Georges University Hospital – providing clinical insight
  • Tom Wright from Haddenham Healthcare – providing industry and design expertise.

Finally, this event couldn’t have been as successful and amazing if it weren’t for the sponsors, especially Haddenham Healthcare for generously donated £1,000 to the winning team as the grand prize. Together with Jobst, LymphLabs, UCL institute of Healthcare Engineering, UCL Students Union for generously sponsoring a total of £6,000 to the event.

Final takeaways – What this hackathon was really about:

Ultimately, this hackathon served two purposes:

1. 1. A challenge-based learning experience for students—teaching them how to build real solutions under pressure, guided by the people who actually live the problem.
   2. A powerful awareness engine—introducing lymphoedema to future clinicians, engineers, designers, and innovators who will shape healthcare in the years ahead.

Those in the lymphoedema community know that lymphoedema needs and deserves more solutions. However, real impact and innovation is rarely a solo effort: it happens when different parts of the ecosystem – patients, engineers, clinicians, charities – come together, and collaborate to build solutions that can create tangible change.

WHAT IS LYMPHORRHOEA?

By Rebecca Elwell

Lymphoedema Advanced Nurse Practitioner and Director of National Clinical Services, Accelerate Health CIC

Lymphorrhoea is defined as leaking lymphatic (lymp) fluid through the skin. “Rrhoea” is used like a suffix meaning “flow” or “discharge.” It is often used in medical terms. Rrhoea comes from the Greek rhoía, meaning “a flow” (like a stream).

Lymphoedema (swelling) causes the skin to stretch and small blisters appear. Fluid then leaks out as it has nowhere to go because both drainage systems (circulatory and lymphatic) are too congested.

Lymphorrhoea can affect any area of the body but commonly affects the legs, the skin can appear shiny with the moisture or, more commonly, little beads of fluid form and you can see the straw-coloured fluid running down the leg.

Lymphorrhoea increases the risk of developing skin damage and cellulitis. It is important to remember that not all lymphorrhoea looks the same. Some people have large blisters, others only small one, some have no blisters at all, just one, pin prick area with profuse, copious, constantly flowing fluid, like a tap or river. For some a very slow single droplet forms and runs and then another and then another.

Anyone with lymphoedema is at risk of developing lymphorrhoea but your risk is increased if your lymphoedema is untreated, if you do not have access to a local lymphoedema service, if you are not able to engage fully in lymphoedema treatment or if you have pre-existing skin conditions (e.g. eczema/psoriasis).

Skin damage (e.g. a cut or a bite) is often the cause of lymphorrhoea but it is possible to spontaneously “spring a leak” without an obvious cause. Also being unwell in yourself, a change in health symptoms or medication can all cause lymphorrhoea.

What can be the impact of lymphorrhoea?

You all know that lymphoedema has a significant impact on quality of life and can lead to anxiety, fear, depression, loss of control, increased social isolation and loneliness. It can lead to poor Body Image and embarrassment, reduced mobility, reduced choice in clothing and footwear and falls! Increased pain and heaviness, delayed wound healing, increased risk of cellulitis and loss of job or role. Imagine then developing lymphorrhoea…..

Increased fear and anxiety, why is this happening? If you have lymphoedema as a result of cancer treatment, lymphorrhoea may raise concerns about recurrent disease. Not knowing who to call or contact, loss of control and self management, an increase social isolation (imagine going out with a sodden shoe or wet hose), getting cold, leaving embarrassing wet patches behind or on clothes. A feeling of not being clean. People who have experienced lymphorrhoea often report intense pain, the skin can become sore and irritable, whitening and bogginess can occur and rawness and redness which can lead to break down or ulceration and the risk of infection increases.

There is a significant expense to having lymphorrhoea, permanently wet footwear, clothes and bedding requiring frequent washing, drying and sometimes replacing.

What is lymphorrhoea like for nurses or doctors?

Managing lymphorrhoea can be frustrating for healthcare practitioners, in the absence of knowledge of the condition, they struggle to comprehend the number of dressings that are required or the number of dressing changes that are needed.

What are the myths around lymphorrhoea?

There are a number of myths around lymphorrhoea:

1. 1. The dressing selection is crucial – THIS IS NOT TRUE, AN ABSORBENT DRESSING ONLY IS REQUIRED
   2. Letting the fluid escape from the swollen area will lead to the lymphoedema going down – THIS IS NOT TRUE, THE LOSS OF LYMPH DOES NOT REDUCE IN A REDUCTION IN LYMPHOEDEMA
   3. That you should keep the area where lymphorrhoea is present dry – THIS IS NOT TRUE, LYMPH FLUID CONTAINS ENZYMES WHICH CAN DESTROY HEALTHY TISSUE, THE AREA MUST BE WASHED DAILY, DRIED AND MOSITURISED
   4. That lymphorrhoea will stop without any treatment, on its own – THIS IS NOT TRUE, LYMPHORRHOEA WILL PERSIST WITHOUT INTERVENTION
   5. That the fluid is only water, not blood or an important body fluid – THIS IS NOT TRUE, THE LOSS OF LYMPHATIC FLUID CAN LEAD TO BLOOD PROTEIN (ALBUMIN) LOSS
   6. That wraps or compression hose can be continued with lymphorrhoea – IN MOST CASES THIS IS NOT TRUE, NORMALLY COMPRESSION BANDAGING IS NEEDED TO MANAGE LYMPHORRHOEA AND WRAPS/HOSE CAN BECOME SOAKED AND THEN WET. COLD FLUID IS HELD AGAINST THE SKIN
   7. Lymphorrhoea is more common in cancer related lymphoedema – THIS IS NOT TRUE, ANY TYPE OF LYMPHOEDEMA CAN RESULT IN LYMPHORRHOEA
   8. That lymphorrhoea is not a wound – THIS IS NOT TRUE, IT IS ESSENTIAL THAT THE BREECH IN THE SKIN IS TREATED WITH THE SAME URGENCY AS IS ATTRIBUTED TO WOUND CARE
   9. There is no need to review health or medication – THIS IS NOT TRUE, IT IS ESSENTIAL TO HAVE YOUR HEALTH/MEDICATION REVIEWED TO RULE OUT ANY TREATABLE CAUSES OF THE LYMPHORRHOEA
   10. That it’s acceptable to call lymphorrhoea “leaking, weeping” or “leaky, wet legs” – THIS IS NOT TRUE, LYMPHORRHOEA SHOULD BE GIVEN ITS PROPOER MEDICAL NAME TO RAISE AWARENESS OF THE CONDITION AND THE NEED TO MANAGE IT CORRECTLY

How do we manage lymphorrhoea?

The British Lymphology Society BLS suggests:

• • See your GP for treatable causes to be investigated and appropriately managed, they should also refer you to a practice or community nurse for dressings and assessment for compression bandaging
  • Protein loss through lymphorrhoea should be considered, referral to a dietitian may be necessary
  • Minimum of one daily washing, with a soap substitute, careful drying of the skin and moisturisation with a bland moisturiser
  • Treat any underlying skin conditions and thought may need to be given to the use of barrier products, to protect healthy skin, these are available in cream, sprays or sticks.
  • Super absorbent dressings may be required, frequent dressing changes may be necessary to ensure containment of leakage and to prevent infection
  • Social situations are important, if the lymphorrhoea affects the legs, they should be elevated. If it affects the arm, the arm should be supported well on a pillow, when sitting. It is essential that you sleep in bed.
  • Compression bandaging is usually used, rather than a stocking or wrap as these will become extremely wet and in contact with the surrounding healthy skin. They are also difficult to wash and dry quickly.

Lymphoedema Network Wales have produced the wet legs pathways and this document is clear “that without the implementation of compression bandaging there is very little hope of controlling or treating lymphorrhoea”

What do you do once lymphorrhoea has stopped?

You should continue with excellent lymphoedema management including twice daily excellent skincare, good positioning, movement and compression, in the form of well fitting compression hose and/or compression wraps.

What happens if the lymphorrhoea doesn’t stop?

If there is no improvement in the lymphorrhoea after 2 – 3 weeks, a referral to dermatology should be considered as it may be necessary to initiate alternative treatment

What happens if the lymphorrhoea affects the genital area?

The management of Genital lymphorrhoea is complicated. It is sometimes mistaken for incontinence and there can be associated embarrassment. There are higher rates of infection and the areas are anatomically difficult to compress. There is no standard pathway for the management of genital lymphorrhoea which makes it hard for health care professionals to know what to do. Excellent skincare is essential and specialist compression options are available. If papillomatosis (warty like protrusions from the skin) area also present and the lymphorrhoea is persistent you should ask for a referral to a specialist Lymphoedema centre (Derby or St Georges, London) as they have joint urology and lymphoedema clinics who will likely be able to provide long term solutions. In female patients referral to gynaecology should be considered

Lymphorrhoea is a debilitating and disabling side effect of lymphoedema which cannot always be prevented but is extremely treatable.

Where can I get help?

If you have any questions or would like further information please do not hesitate to contact me (Rebecca.elwell7@nhs.net) or the Accelerate Health CIC. If you can travel to London:

• • And would like a private appointment you can contact us on acceleratecic.com
  • you can obtain a referral from your GP to Accelerate

Our team will be delighted to hear from you and see you.

By Matt Hazledine

One of my core objectives when launching Lymphoedema United was to raise awareness of the condition and encourage more men to share their experiences and challenges with others, providing inspiration and hope that you can live better with lymphoedema.

I am absolutely delighted that through the website, charity golf day, local and virtual Meet-ups, social media and my second book ‘Lymphoedema United – You are NOT alone!’, we now have a growing number of fellow men uniting with the lymphoedema community.

Our latest additions to the Meet the Member’s section of the website are Jon and Tony from England and Fenton from Philadelphia, USA.  They join nine other men on this page, some of whom have met or connected with others via email/Teams/phone, in some cases friendships have been made for life!

I recently interviewed Jon and the video can be seen here youtu.be/xsqqTqB0-hQ and do visit our YouTube channel for all videos. www.youtube.com/@lymphunited/videos

Check out their stories lymphoedemaunited.com/meet-the-members/ and if you are willing to share yours, please email Matt at hello@lymphunited.com

Please note: You’ll have to log in with your member’s password to access their individual pages.

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