Lymphatic Research

Spotlight on Lymphatic Research – ‘LYMRES’

Blog by Prof. Pia Ostergaard, Mike Mills MPhys MSc, Adrian Rawlinson and St George’s Hospital Charity – Lymphoedema Research Fund

This blog is not meant to diagnose or treat conditions.

When I, Matt Hazledine, founded Lymphoedema United and wrote my first book, ‘How to LIVE BETTER with Lymphoedema – Meet the Experts’, it was always with the purpose of raising money for charity, particularly the Lymphoedema Research Fund, managed by St George’s Hospital Charity. Why? Because the Research Fund was originally created by Professor Peter Mortimer, who was my lymphoedema consultant at St George’s Hospital, London, for many years after my diagnosis in 2011. He helped me in so many ways, including supporting all my projects to raise awareness of lymphoedema and raise money for charity.  Therefore, with enormous gratitude for Peter and the St George’s team, I felt compelled to do my bit to support the fund, which in turn supports the LYMRES team at St George’s University of London, headed by Pia Ostergaard, Professor of Human Genetics & Head of Genetics Research Section, Cardiovascular & Geonomics Research Institute.

Since 2022, Lymphoedema United, my book and Charity Golf Days have raised over £16,000 for the fund, excluding significant donations from several of our members, notably, Adrian Rawlinson.

How is the money raised?

To answer this question, Adrian, my wife Vicki and I were privileged to be invited to visit the LYMRES department in July 2024 to see the tremendous work the research team are doing for ourselves.

I am delighted to introduce you to articles written by Professor Pia Ostergaard, Mike Mills MPhys MSc HCPC registered Clinical Scientist and Adrian Rawlinson, a successful businessman, philanthropist, artist and golfer.

Scientists at St Georges are looking at lymphoedema and lymphatic dysfunction from many angles. Some are looking at the microscopic, but incredibly important, scale of cells and genes. Others are looking at the lymphatic vessels and body tissues within a whole limb. Although the way we work is different, we are all trying to improve understanding of what goes wrong in the body and combine the results from our different approaches to do so. This helps us understand why the lymphatic system is not working as it should, and how that then manifests as lymphoedema. We are incredibly lucky to work alongside some of the best lymphatic clinicians and therapists in the world. They ensure our work is focused on improving lymphatic issues of people with lymphoedema, and they help putting the research into practice. For example, by combining information from the clinic with genetic insights from the research team, we have identified 9 genes that cause lymphoedema. Testing for those genes is now available through the NHS.

Our research would not be possible without people living with lymphoedema raising their hands and agreeing to be prodded and poked, have blood taken, and undergo imaging studies like MRI (more on this later!). We are so grateful that they do. A big thank you to all volunteers!

Scientific research is also not cheap. To carry out the work that we do, we have to go cap-in-hand to charities and other research funders to make a case for why our research deserves investment. We have been lucky in recent years to receive two large pots of money from the Medical Research Council (MRC) and British Heart Foundation (BHF), which has, and is, facilitating the bulk of our research. We have also received funds from the Lymphoedema Research Fund (LRF) managed by St George’s Hospital Charity, and two recent PhD studentships from the BHF. One of those is for Mike, and our success in receiving that BHF grant owes an awful lot to the LRF. The funding received from the LRF allowed Mike to undertake some preliminary research and the results were crucial to demonstrate the feasibility of our imaging methods and were included in our application to the BHF. Those preliminary results will be carried forward and built upon in his upcoming studentship.

We are pleased to hear that the LRF has now raised over £250,000. This is a milestone which makes it possible for the charity to support even more lymphatic research. The funds are earmarked to support the development of a new person to undertake several years of dedicated lymphoedema research. Lymphoedema does not get the attention it needs or deserves. We need more talented clinicians and scientists working in this area and also acting as the champions, who continue to raise awareness about the importance and impact of the lymphatic system and lymphoedema. The raising of £250,000 is a big step in that direction and will support the training of new staff who will facilitate improvements in lymphatic science and care in the future.

The following is a personal account by Mike describing his current and upcoming MRI research project.

Current MRI Research at St George’s by Mike Mills

Returning to imaging. I just wanted to outline some of the ongoing research, which was made possible in part thanks to funding from the LRF, and what is planned at St George’s in the future.

Lymphoscintigraphy (often simply referred to as a ‘lymph scan’) has been the backbone of lymphoedema imaging for decades and plays an important role in lymphoedema diagnosis. Lymphoscintigraphy requires the injection of a radioactive tracer, typically in the hands or feet, which should be taken up by the lymphatic vessels and drained up the arms or legs. By using a special camera to detect the invisible light emitted by the radioactive tracer, images of the patient’s lymphatics can be produced. As can be seen in Figure 1, potential lymphatic defects can then be identified.

When I, Adrian Rawlinson, was diagnosed with secondary Lymphoedema in the aftermath of life-saving surgery for cancer (in 2014), the realisation soon hit me that Lymphoedema treatment might be regarded as the Cinderella of health care. I found that frustrating and depressing and my view not much has altered in a decade although the pace of change might finally be starting to accelerate. Professor Christine Moffatt is correct when she refers to Lymphoedema as “hidden, neglected, global.”

In terms of treatment and support it is very much a postcode lottery, but for those of us with a UK address are hugely better off than many people suffering with Lymphoedema and truly horrible variants such as filariasis in tropical and sub-tropical regions of the world. However, it is brilliant that when appropriate resources are allocated and with a generous dose of determination and adequate funding, then this dreadful disease variant can be successfully eliminated.

There are a huge number of factors to take into consideration but whoever I talk to and whatever I read, there seem to be some common and rather depressing denominators, that do not seem to have changed much.  These continue to be lack of awareness, lack of allocated time and visibility in education, acute lack of research activity and funding and inconsistency in treatment options and quality of service, all of which are critical precursors if a cure is to be found.

It’s easy to criticise, not so easy to input effective action and try to make a positive contribution.  There is so much to be done, so much to tackle, that I found it very difficult to work out where I could focus what I can contribute to optimum effect.  In the end I decided to focus on awareness and research, based on the assumption that awareness has a lot to do with effective communication, whereas research needs funding and I reached the conclusion that the most effective direct route in the UK might be through the St George’s Hospital Charity’s Lymphoedema Research Fund.

The decision was made easy because I had already met Mike Mills MSc from St George’s University of London (SGUL) at the first Lymphoedema United golf day back in 2022, so I had the benefit of an insight into the vital research project he is conducting focussing on MRL, (Magnetic Resonance Lymphangiography). I later explained to the SGUL team that I was keen to understand much more about the research activity, the process, the challenges, the priorities, the pressures and the timescales and Pia Ostergaard very kindly invited Matt Hazledine and I to visit SGUL, to meet the brilliant LYMRES team and see at first hand some of the current projects in both the dry and wet labs.