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This Lymphoedema Awareness Month, one of our partnered organisations – Lymphoedema United – is aiming to help spread the positive message of this cause, but also demonstrate to those living with lymphoedema that support is available beyond the awareness month.
What is Lymphoedema?
Lymphoedema is a chronic, lifelong disease with no cure and there are almost 450,000 people in the UK living with the condition, according to the British Lymphology Society’s estimates.
The disease itself involves the presence of chronic swelling (oedema) that occurs because of a failure of the lymphatic system to drain fluid from the spaces in-between the cells in our body. It may develop in someone with a previously healthy lymphatic system that has been damaged – for example, by cancer treatment or infection - as a ‘secondary lymphoedema’, which is the most common type of lymphoedema.
‘Primary lymphoedema’ can occur when the lymphatic system fails to develop properly. It can also occur when someone is born – sometimes as an inherited condition. However, it is not a single condition, as there are many different types of primary lymphoedema.
Lymphoedema United: In Focus
Lymphoedema United’s founder, Matt Hazledine, who has had lymphoedema since 2011, started the organisation back in 2021, and at the same time released a book - “How to Live Better with Lymphoedema” - with the overarching aims being to help everyone from those living with the disease, to those who are newly diagnosed and the family and friends of those affected, by offering them guidance and creating a community where they can find support.
Lymphoedema United is a free-to-join organisation and is also a source of useful information and guidance for its members, much of which is authored by partnered experts and medical professionals. This covers everything from learning more about lymphoedema and how it affects people, to advice on the best compression products, clothes and shoes from other partnered industry suppliers and how people can manage both the mental and physical effects of the disease. In addition:
Upcoming Events with Lymphoedema United
Lymphoedema United hosts regional roadshows, panel events with other Lymphoedema experts and even golf days – with many of which also being fundraisers for the Lymphoedema Research Fund and other medical charities.
Interview with Lymphoedema United’s Founder, Matt Hazledine
We spoke with Matt for some additional insights regarding his personal story and the formation of Lymphoedema United:
Could you tell us more about your experiences with lymphoedema?
MH: “In 2011, at the age of 40, I experienced a severe episode of cellulitis in my left leg, which hospitalised me for 14 days and subsequently led to my lymphoedema. In the first couple of years with the condition, I really struggled to come to terms with adjusting my life to accommodate my very swollen leg. Through trial and error, wearing every appropriate compression garment, testing almost every product, having all therapies known to me and even two different types of surgery, I learned what works for me and what doesn’t.”
How did this then lead to you starting Lymphoedema United?
MH: “I always felt I would have benefited from an additional support network and more expert advice to help guide me through the difficult periods. This is exactly what we’re trying to achieve with Lymphoedema United and one of the main reasons we get medical professionals to offer their expertise to our members.”
Can you tell us more about the symptoms of lymphoedema?
MH: “People of any age should look out for the following as possible symptoms of the disease:
1. Swelling in your limbs - this is one of the most common symptoms and can occur in the entire limb or part of it.
2. Tightness or tension in your limbs - your limbs or affected areas can feel tighter, fuller or heavier.
3. Tighter clothing and jewellery - you may notice your clothing, jewellery or watches feeling tighter or not fitting as well, due to swelling.
4. Cellulitis - you may suffer from more regular cellulitis, which is a serious bacterial infection of deeper skin layers. Affected areas of your skin can become red, hot and painful and will require antibiotics.”
What are some of the more common problems people with the condition face?
MH: “Everyone has different experiences with lymphoedema, so it’s really about managing your condition and symptom relief. Our experts promote what we call the ‘Four Cornerstones of Self-Management’:
1. Compression - Most people living with lymphoedema will endure the daily ritual of wearing compression garments. This includes the struggle of putting on ‘donning’ and taking off ‘doffing’ their compression garments and finding other clothing items that fit you comfortably and are easy to wear. For instance, for me, wide fit shoes, and of course the specialist Gentle Grip and IOMI FootNurse socks range, without tight elasticated tops have now replaced all my pre-lymphoedema shoes and socks in my wardrobe. But ultimately, you need to find compression items that are right for you; these should not be painful when you wear them and if needs be can also be made to measure.
2. Skin Care - This is an essential part of daily self-management for people who have lymphoedema or who are at risk of developing lymphoedema. Keeping your skin intact is the first line of defence against developing infection in the affected area and looking after your skin helps it to perform this important function.
3. Healthy Lifestyle - balanced diets can help with weight management, but keeping active and moving is essential. This doesn’t have to be vigorous exercise but simple movements that we can all make as part of our typical day. Sitting still for long periods of time should be avoided, where possible.
4. Lymphatic Drainage - To assist the lymphatics in draining the fluid, there are various forms of lymphatic drainage techniques, which can be performed manually or by using a machine called a compression pump.
To return to another key point, a big issue is the fear of getting cellulitis – the serious bacterial infection of the skin that I had – which if not treated quickly can progress to life-threatening sepsis. My first experience with it was like having acid poured down my leg. I was often in a wheelchair, and had to use a walking frame to walk, due to the intense pain.”
How can lymphoedema indirectly affect other people?
“Having lymphoedema can also be a very isolating experience, which can be incredibly tough on our mental health. Relationships can also suffer; I’ve met several people who are wheelchair bound and their spouse has become their carer and it has naturally put a huge strain on their relationship.”
Do you have a piece of key advice for those looking for support?
“For many people I have spoken to, they have an understanding family and supportive friends but have said unless you have lymphoedema, you don’t really know what it’s like to live with it 24/7. That’s why, in my opinion, meeting other people with the condition, ideally locally, is so valuable to everyone concerned.”
Plans for the Future
Matt’s future plans are for Lymphoedema United to host more regional roadshows, grow the membership of the organisation and ultimately continue raising more awareness and money for charity. Those interested in joining can get a free membership to the organisation which also includes regular eBulletins, eNewsletters, offers, discount code and invitations to exclusive events for members.
More information about memberships can be found here.