Volume 11 – April 2024

Welcome to our eleventh 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 St George’s Lymphoedema Team’, ‘Gut Health & Lymphatics, New Products and Promotions, plus news on a ‘Podcast Series’.

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 St George’s Hospital Lymphoedema Service

I am extremely grateful to the Lymphoedema team at St George’s Hospital in London, for two reasons. The first, and for me the most important, was to have provided expert care, professional advice and medical solutions to help me to live better with lymphoedema and manage the condition on a daily basis. I have been an NHS patient of St George’s since 2012 under the care of Professor Peter Mortimer, Dr Kristiana Gordon, Patryk Gawrysiak, Mark Pearson and Anca Tudor. I would not be where I am without their care and support, so this is my opportunity to thank them publicly.

The second reason, is that the team wrote important trusted information and guidance in my first book, ‘How to Live Better with Lymphoedema – Meet the Experts’, to provide help and to improve our understanding of lymphoedema. The team also joined the Meet the Experts section of our website, enabling new and undiagnosed people with lymphoedema to find expert help from some of the best medical professionals in the UK, working in this sector. Once again, I thank them for contributing to my projects to support our lymphoedema community.

Appreciating how busy Dr Gordon and the team are, I am incredibly grateful to them for providing an insight into their work, their ethos and how they can help people new to, and/or suffering with lymphoedema.  I’m delighted to introduce Dr Kristiana Gordon and Patryk Gawrysiak to tell us more.

Firstly, please introduce yourselves as some of our members may not know you.

Can you tell us a bit about the Lymphoedema Service at St George’s Hospital?

Kristiana: The Lymphoedema service was set up in the 1980s by Prof Peter Mortimer. Initially it was a small part of the Dermatology department, but has significantly expanded over the years. We offer diagnostic clinics – essentially this is where a patient is seen and the cause of their swelling is diagnosed. Occasionally we need the help of lymphoscintigraphy scans to help us make an accurate diagnosis. Apart from diagnosing lymphoedema (and lipoedema), we also offer support to other lymphoedema therapists across the UK who might need guidance on how to manage recurrent infections or determining if their patient might be suitable for surgery. On that note, we offer specialist clinics with the Urologists (who offer surgery to men with problematic genital lymphoedema) and Plastic Surgeons (who offer minor debulking surgery or liposuction of a limb, but only to the small number of patients that are suitable for this treatment).

Patryk: We are a large team of 12 Clinical and MLD Lymphoedema therapists. Our backgrounds are varied, some are nurses or physiotherapists by training, and we have a podiatrist too. This means we bring a variety of skills to the clinic which come in handy for some of the more complex patients we care for. We offer approx. 16,000 lymphoedema therapy appointments each year for adults and paediatric patients. We treat all types of lymphoedema including oncology-related and primary lymphoedema. We also have very strong links with Orthopaedic, Urology and Plastic Surgery Departments as we offer a shared-care approach for the more complex patients. 

What lymphoedema therapy treatments are patients able to access?

Patryk: We offer 6-monthly appointments so that patients can be measured and provided with 2 new sets of compression garments to manage their lymphoedema. These may be circular or flat-knit depending on the individual’s needs. Sometimes we need to offer alternative compression such as Velcro-wraps. These regular appointments allow the opportunity for the team to check our patients are not suffering with recurrent cellulitis (and we advise the GP how to manage this if necessary). Weight management, movement and skin care are key components of lymphoedema management too, so we advise (and occasionally nag!) on these aspects too.

 We also offer intensive lymphoedema treatment in the form of daily compression bandaging (Monday-Friday) for several weeks. This treatment is offered to patients with significantly enlarged limbs that we want to reduce in size before fitting them with compression garments to maintain the smaller limb volume. We no longer offer manual lymphatic drainage massage (MLD) routinely as the evidence to support its use is weak. However, we have seen benefits in some types of lymphoedema so offer it to some patients with head & neck, breast or genital lymphoedema.

We also offer intermittent pneumatic compression (IPC) therapy, but it depends on clinical and logistical factors so not everyone is a good candidate for this therapy option. Recently we have trialled PBM (Photobiomodulation) therapy with good outcomes, hopefully we will be able to offer this treatment to patients soon. 

Can anyone with lymphoedema be referred to St George’s Hospital?

Kristiana: We are happy to see and help anyone with lymphoedema. However, referral restrictions are in place to prevent the service being used inappropriately, especially if someone has a lymphoedema clinic near them. We can accept a GP referral for someone living in the Wandsworth or Merton boroughs of London. Otherwise, the referral needs to come from an NHS Consultant or an NHS lymphoedema therapist (who may need to ask us for advice on managing recurrent infections or if their patient may be a candidate for liposuction). However, I am able to accept a GP referral for anyone under 19 years of age, so hopefully all children with lymphoedema will have a smoother journey to see us in the clinic.

What makes the St George’s Lymphoedema Clinic different from other clinics in the UK?

Kristiana: Most lymphoedema therapy clinics in the UK don’t have the luxury of having on-site doctors working with the lymphoedema therapy team. Therefore, our patients have access to medical decisions about any lymphoedema complications. We also have dedicated clinics that to the best of my knowledge are only offered in the Derby lymphoedema clinic. These include the Urology and Plastic Surgery clinics, but also multi-disciplinary meetings with Geneticists and Interventional Radiologists. Working with so many colleagues from varied specialities allows patients to access the care they need.

Whilst our main focus is on diagnosis and formulating a management plan for our patients, we always consider if we can include them in one of our research studies. We are very lucky to work alongside our scientific team, who happen to be on-site in the University within the hospital. This set-up enables us to take our research findings “from bench to bedside” , and vice-versa, so that patients benefit as much as possible. The aim of our research is to develop better treatments for the future, for example, we hope to be able to treat the subtypes of primary lymphoedema differently based upon the underlying mechanisms of lymphatic failure.

Patryk: We are a very large Team of Therapists from different training backgrounds (Nurses, Physiotherapists, Podiatrist and MLD Therapists). In addition, we have very strong support from our consultants. A varied background of specialities provides the best outcomes for the patients. We have unique urology and orthopaedic treatment pathways, helping patients to achieve the best outcomes after surgeries e.g. knee or hip surgeries, and speed up their recoveries. We also have the biggest number of paediatric and primary lymphoedema patients in the UK.

What research studies are you working on at the moment?

Kristiana: Our main interest has been the detection of new genes that cause primary lymphoedema (PL). Primary Lymphoedema occurs as a result of an underlying genetic abnormality. Suspicion should be raised if the lymphoedema develops during childhood or early adult years and in the presence of a family history. All children with PL benefit from being seen by the Derby or St George’s teams for consideration of genetic testing to the known PL genes. Many causative genes have been identified, but they explain only 10% of the patients seen in clinic as there are more genes to be discovered through research projects.

For those patients where we cannot identify the causal gene mistake yet, recognition of clinical patterns is key to making a clinical diagnosis and then recruiting to research studies that hopefully lead to identification of new genes. In other words, we collect DNA from patients with the same pattern of lymphoedema/lymph scan findings / other health problems, and then analyse their DNA together in the hope they share a gene mutation, that we subsequently hope to prove is causal with additional experiments. Recruitment of all adults with PL is not possible due to cost and manpower restrictions at this time, but we hope to include all patients with PL at some point in the future.

More recent research projects are looking at better ways to image the lymphatic system so that we can understand that the mechanism of disease better (i.e. why the lymphoedema occurs). We suspect it may differ between the different types of primary lymphoedema, so we are recruiting patients with different types of PL to undergo imaging (with ICG- and/or MRI-lymphography) to look at their lymphatic system in detail. ICG lymphography is an imaging technique that is not yet routinely used in NHS clinical practice. It permits real-time imaging of the lymphatic system by injecting green ICG dye into the skin and then detecting the fluorescent light emitted from ICG after shining an infrared laser on it. ICG lymphography can show us information on lymph vessel contractility and function that could be used to understand mechanisms, and also to grade how severe the disease is and to assess response to treatment.  However, ICG is limited to imaging only the most superficial vessels in/under the skin, so we need to image patients with MR lymphangiography in order to look at the deeper vessels.  MR lymphangiography (MRL) is a relatively recent method of investigating the anatomy of lymph drainage pathways (lymphatic vessels and nodes) and assessing abnormalities in disease states such as lymphoedema. MRL provides 3-dimensional imaging of the lymphatic system. The potential for MRL research to directly influence clinical practice in diseases of the lymphatic system is significant.

What challenges do you and the team face when delivering care to patients with lymphoedema?

Patryk: We face multiple challenges on a daily basis. One of the biggest, in recent years is seeing our patients struggle to maintain a healthy weight. This problem has increased in the post-COVID time. We may say that we have a rising BMI pandemic.  Physical activity is another aspect which is very often neglected by patients leading to further complications in management of lymphoedema. Compliance is a very wide topic and it may vary between patients of different ages; there are different reasons for lack of compliance in teenagers when compared adults. However, we are slowly seeing improvements in this field as patients’ education in lymphoedema management is improving and patients are more likely to comply if they understand all do’s and don’ts. 

Kristiana: As you know, there are many challenges for anyone living with lymphoedema, but the clinicians caring for them face challenges and frustrations too. We lack the staff, funding and physical space to be able to offer care to as many patients as we want to. It is also very frustrating that we don’t have more treatment options. But I am hopeful that research will lead to better treatments in the future.

For further information about Dr Kristiana Gordon and our panel of lymphoedema experts, visit https://lymphoedemaunited.com/meet-the-experts/

The importance of Good Gut Health for the Lymphatics

Have you ever wondered whether what we eat or drink can effect our lymphoedema and level of swelling?  I did and thought it best to contact an expert in this field to find out more.  Jean LaMantia is a Dietitian, Speaker, Cancer Survivor and Author of several books including ‘The Complete Lymphedema Management and Nutrition Guide.  Last year, Jean joined our Meet the Experts panel and also tells her incredible story on our Meet the Member’s section of the website https://lymphoedemaunited.com/meet-the-members/ and a more in-depth account in our book ‘Lymphoedema United – You are NOT alone!’ https://lymphoedemaunited.com/books/

I interviewed Jean recently about the importance of a healthy gut for people with lymphoedema, or for those who want to have a healthy lymphatic system. A couple of questions from our members were also answered by Jean during this recording. I hope you find it helpful.

To purchase Jean’s books and find out more about her classes, courses and services, visit www.jeanlamantia.com or follow her on Facebook https://www.facebook.com/jean.lamantiaRD/ or Instagram https://www.instagram.com/cancer_lymphedema_dietitian/

New Walker Socks Offer & Free Prize Draw from Sock Shop

It’s important for me to get away from the desk and get my lymph moving. I thoroughly enjoy playing golf, even though I’m not great, as it gives me the opportunity to get out into the fresh air, be one with nature, have some much needed ‘me-time’ and exercise.  Playing 18 holes means walking, on average, 6 kilometres or 3.75 miles, in addition to swinging the club more times than I’d like to!

I am incredibly mindful that in 2011, I got a blister by wearing a brand-new pair of golf shoes and inappropriate socks, which caused a horrific cellulitis infection in my left leg, that in turn triggered my lymphoedema. https://lymphoedemaunited.com/information/cellulitis/

Since then, I have been super-cautious to look after my feet and wear the right socks when walking and they are worth every penny.  I also have to wear soft top socks, that do not create an indentation in my calf from the tight elasticated sock top. In the past, traditional socks have caused my ankle to swell below the elastic which kind of creates a tourniquet effect, reducing my lymph flow.

I have been keen to inform as many people as possible about SockShop IOMI FootNurse and Gentle Grips socks, as these are all that I wear now.  The range is on my website (link below) and I am so pleased to tell you about their new product IOMI Diabetic Walker Socks.  I have worn these socks several times on the golf course and on long country walks. They are so comfortable to wear and I feel reassured that my feet are being protected.

Sock Shop Walker Socks Features & Benefits

• Non-Binding Comfort Leg, Full Cushion Foot, Anti-Bacterial and Smooth Toe Seams. IOMI® FootNurse is a brand dedicated to increasing comfort and aiding reducing ailments in your feet.
• Developed to help manage the symptoms of Diabetes for people who love Walking and the Great Outdoors.
• With FootNurse Easy-Stretch, these socks gently stretch to the natural contours of your leg, with an easy stretch, these IOMI diabetic Walker socks will leave no nasty constriction rings.
• Reduces irritation on the tip of your toes, a rough toe seam would potentially damage a diabetics foot, this smooth toe seam will do no such thing, it will make it seem a pleasure to wear these socks.

Special Offer & Free Prize Draw

Our friends at Sock Shop are extremely supportive of the lymphoedema community and have provided a SPECIAL OFFER and FREE PRIZE DRAW, exclusive to members of Lymphoedema United.

SPECIAL OFFER

15% off Walker Socks from 1-30^th April 2024, using the offer code LymphWalk at gentlegrip.co.uk. No minimum purchase requirement. Offer code can’t be combined with other discounts.

Order yours today using this link https://gentlegrip.co.uk/discount/LymphWalk?redirect=%2Fcollections%2Fwalking-socks

FREE PRIZE DRAW

10 lucky members of Lymphoedema United could win a pair of Sock Shop IOMI Walker Socks absolutely Free, by entering our Free Prize Draw by 23.59pm on 30^th April 2024. One entry per person. No purchase necessary. T&Cs apply. The draw will be made at random week commencing 6th May 2024. 10 winners will be notified by email and introduced to Sock Shop, who will send the appropriate product and size direct to their home.

To enter, send an email to hello@lymphunited.com quoting your name and Sock Shop Free Prize Draw April 2024, before midnight on 30^th April 2024.

Walking with Lymphoedema: What you need to know

Movement and exercise are good for us in so many ways. They can help us lose weight, build muscle, increase stamina, fight stress and sleep better – among many other benefits.

People with lymphoedema can benefit from movement and exercise as much as anyone – and pretty much any movement will do. It’s just a question of what you enjoy and what you can fit into your day or your week.

Rebecca Elwell MSc Lymphoedema and one of the experts on www.lymphoedemaunited.com states:

 “Unlike the heart, the lymphatic system doesn’t have a pump, so we need to help it along. When we move our bodies, our muscles pump and we breathe deeper. These actions increase the flow of lymph around the body. This prevents or reduces any swelling, as well as helping our body get rid of bacteria and other unwanted substances.

 It’s known that movement is good for our heart and lungs. It can help to strengthen our joints and bones, relieve pain and reduce fatigue; it’s also good for our mental health. However not everyone knows it’s great for our lymphatic health too.

A healthy lymphatic system is key to our overall health because the lymphatic system helps defend the body against illness and keeps our body fluids in balance. When the lymphatic system isn’t working properly, fluid builds up in your tissues, which causes swelling (lymphoedema) as well as other health problems.”

Getting active around your home, doing housework, gardening or odd jobs can help your lymphatic system. You can even exercise without leaving your lounge – for example, by standing up and moving around the room during every ad break.

If you are able to, walking is one of the best exercises for people living with lymphoedema. It helps your body to burn off excess calories, building stamina and improving your heart health. It can help to ease stress and anxiety, and it’s nice and easy on your joints too.

Best of all, walking is something that nearly everyone can do, any time or place, so it’s easy to fit into your routine. For example, you can walk to work, to school or to the shops. If your journey is too far to walk, you could park your car or get off the bus or train early and walk the rest of the way.

Or if you prefer, you can walk for pleasure – start from home and see where your feet take you or explore green spaces nearby. And if you want to take it up a notch, you can start taking longer hikes, get into hill-walking or join a walking group for motivation. You could even build a whole holiday around walking a long-distance trail.

If you have lymphoedema, especially in your legs and/or feet, there are a few things to keep in mind when you’re out and about on foot.

Make sure you look after your feet. People with lymphoedema are prone to getting cellulitis, a painful and sometimes severe infection. Therefore, it is best to avoid foot complications such as cuts, sores, athlete’s foot and blisters. Problems like these can easily worsen over time and lead to infection, so it’s best to stop them happening in the first place – and your choice of footwear can be crucial.

To protect your feet, choose strong, sturdy shoes or boots that support without pinching or rubbing. Never walk outside in bare feet. And don’t neglect your socks! If they pinch your ankles or rub the skin of your feet, they can cause cuts, sores or blisters, particularly on longer walks. That’s why it’s always worth checking your feet when you get home.

IOMI FootNurse Diabetic Walker socks are specially designed for people with diabetes who want to stay active and enjoy the great outdoors. They have a non-binding comfort leg, so they gently mould to your shape to stay up without pinching. The full cushioned, easy-stretch fabric, rich in merino wool, keeps your feet comfortable and protected. Ingenious smooth toe seams (with stitching on the outside) keep rubbing to a minimum, while the reinforced heel and toe prevent nasty holes opening up. Finally, the anti-bacterial fabric helps to fight infection.

With all these things in place, you’re all set to get walking. See you on the trail!

For more information about the Sock Shop range, visit https://lymphoedemaunited.com/meet-the-suppliers/sock-shop-iomi-footnurse/ and enjoy a 10% discount using your members discount code LymphUtd.

‘The LymphCast program is a conversation aimed at education and discovery. Our world-class experts, and their guests, aim to enlighten patients and healthcare professionals in understanding these chronic and challenging diseases.’

Amy and I were delighted not only to appear in LymphCast episode 40, but also to be offered six other podcast episodes to introduce 12 guest authors from our book (2 per episode). This provides a wonderful opportunity for people to hear and see (as on YouTube too) first-hand, the challenging and inspirational stories from some of the courageous people from our book, who live with lymphoedema.

Listen on Spotify

https://open.spotify.com/episode/0n8G6kKBLRmi1HaIuOF7rZ?si=0ed28bfa9800403a

Watch on YouTube

https://youtu.be/AtyvFPl585c?si=Kia6LfCIkEFEv5zo

More Information

You can find out more by clicking on these links:

https://www.chubackveincenter.com/about/john-chuback-md/

https://pod.co/lymphcast

Future Episodes

Future episodes include Graham Rooms, Tom Neilson, Jean LaMantia, Angela Marquez, Amy Beaith, Kiersten Wall, Kruti Kachalia, Carmen Rene, Catherine Rosenberg and Radhika Batra

The podcast is available on all good platforms, such as Spotify or you can watch them on YouTube https://www.youtube.com/@lymphcastnetwork

To purchase a copy of the book ‘Lymphoedema United – You are NOT alone!’ visit our website https://lymphoedemaunited.com/books/

More Information

Click on the PDF or Weblink below for more information about the Thermoregulating products, including:

• Product Range Overview
• Choice of Colours
• Product Features
• Study Results – How Thermoregulating Works
  • Moisture Absorption
  • Cooling Effect
  • Thermal Insulation
• Sizing Chart

https://www.sigvaris.com/en-gb/campaigns/essential-thermoregulating

To see more products from SIGVARIS GROUP, visit the Meet the Supplier’s section of our website. https://lymphoedemaunited.com/meet-the-suppliers/sigvaris-group-britain/

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