In this edition we are privileged to bring to you an Interview with Matt Hazledine, the founder of ‘Lymphoedema United’, which is a brand-new support platform for people affected by Lymphoedema. Matt has had Lymphoedema since 2011 following a bout of cellulitis and after finding that there was not the support network and information he wanted, he decided that he wanted to help others to live better with lymphoedema and raise awareness of the condition. He particularly wanted to address the issues around men and lymphoedema and encourage men especially to talk about issues that were troubling them. Any money raised during the course of his work will be donated to selected lymphoedema charities.

LS: What are the challenges you face being a man diagnosed with lymphoedema?

MH: After a severe episode of cellulitis in June 2011, I was diagnosed with lymphoedema in my left leg. At its worst, the volume in my left leg was 58% bigger than my right leg.Having lymphoedema is truly life-changing and it affected me both physically and most certainly mentally in the early years.

The challenges I faced are not unique to me it would appear, through talking to others.

Physically, my heavy and much larger left leg made me clumsy as I would misjudge distance and often catch my leg on the corner of a desk at work, knocking things over and drawing attention to myself. After several years of my right-side over-compensating for my left, I would walk and stand leaning to the right, to the point where I ended up with a disc-bulge in my lower back, which was agonising needing steroid injections to ease the pain. Finding ‘off-the-shelf’ smart trousers to wear for work or jeans for casualwear, was practically impossible and to this day, I haven’t worn shorts in public since having to wear a compression stocking from diagnosis over 10 years ago. That, one could put down to vanity. My view is that I don’t want to draw attention to my ‘abnormal’ leg. There are many more challenges including occasional pain and certain restrictions that are not advised when having lymphoedema, but I have accepted these and just get on with leading as normal a life as I can.

Mentally, certainly for the first 4-5 years, lymphoedema affected me more than I ever let on, until I wrote my book last year, when I essentially bared my soul and told my personal journey. I used to bury my head in the sand and when asked how I was, by friends and family, “I’m fine!” was my stock answer. Who was I kidding…no one! The psychological impact of lymphoedema should never be underestimated or dismissed by medical professionals. I was one of the lucky ones, in that my therapist and I used to talk non-stop during our six-monthly appointments and especially when I had her undivided attention while receiving multi-layer lymphoedema bandaging. I would tell my therapist everything including the impact my swollen leg was having on my self-esteem and self-confidence. It helped me to talk to a professional who truly understood the condition.

There are always solutions to problems

So, are these challenges specific to men? I would say absolutely not! The main point I think I have identified, is that typically men don’t talk enough, which isn’t healthy and can result in resentment and stress. My understanding is that women are more open to discuss their ailments with friends and family, whereas us fellas tend to keep the stiff upper lip. However, as us chaps evolve, we are becoming more open to talk about our health, especially perhaps, to those in the same boat. That’s why I included a Meet the Member’s section on our website, to encourage people with lymphoedema to unite and share their experiences and tips. Please take a look. 

LS: Do you feel that there are any gaps in treatment or extra considerations that clinicians should know when treating men with lymphoedema?

MH: Overall, I am fortunate to say that the care received from my local therapists in Kent and the whole lymphoedema team at St George’s Hospital has been extremely comprehensive, both in terms of reducing and maintaining the leg swelling and the flexibility to explore alternative product solutions. The relationship between a person with lymphoedema (or patient as we are known) and a medical professional, should be two-way in my opinion.Living with lymphoedema is a challenge 24/7 365 days a year and no one knows our bodies like we do. It is, therefore, our responsibility to inform ourselves as much as possible about lymphoedema, the 4 cornerstones of self-management and the array of products available from specialist suppliers that are there to help us to better manage our condition.In my experience, once informed, we can begin to work together with our therapist and not only discuss our problem but contribute to the discussion to find a suitable solution. I have done this recently with the style of compression stocking I wear, and the therapist was very happy to order something new.

Try and encourage the men to talk to them, or to connect with others living with lymphoedema through support groups for example.

I have recently spoken with a man with lymphoedema, who told me that finding a compression garment that addresses their swelling around their mons pubis and genitalia area has been a big challenge. It is perceived that there aren’t that many products specifically designed for men and if there are, it’s difficult to find them. To assist with this problem, there is a Meet the Suppliers section on our website, which showcases specialist products from many suppliers.Members also receive a discount code to use on purchases made directly with the supplier.

Referring back to my first answer, my request would be for therapists and medical professionals to allow a proportion of the allocated time at our six-monthly appointments, to find out how we are really feeling and to check up on our mental health. Try and encourage the men to talk to them, or to connect with others living with lymphoedema through support groups for example. I fully appreciate there are time constraints due to the increasing number of ‘patients’ a specialist has to see now, so this isn’t a criticism of our wonderful medical professionals.It’s an ideal world scenario, I suppose.

LS: If there was one thing you could tell your past self that you know now, what would it be?

MH: This is an excellent question, and one that I go into more detail in my book “How to Live Better with Lymphoedema – Meet the Experts”.If my 50-year-old self could give my 40 year-old self (the age when I was diagnosed) some key advice, it wouldn’t be one thing, it would be three:

1. There are always solutions to problems, or at least methods to improve your quality of life and mental wellbeing. Research, contact the right people and ask questions. Other people do care and will help you, but you often have to be proactive. Nothing comes to those who wait!
2. Talk to others, don’t put your head in the sand. Unite with people with lymphoedema as discussion and swapping tips will often find solutions to help you to better manage the condition. A problem shared is a problem halved!
3. Acceptance. Lymphoedema is with you for life. Stand tall, be counted and make a positive impact. Find solutions, get involved in the community, raise money for charities and help others to live better with lymphoedema. There is always someone worse off than you!

There are three cliches here. I would have given these cliches short shrift at 40 and probably ignored them. However, as I’ve got older, I have realised that cliches are cliches for a reason. Because they are usually true.

LS: What drove you to set up Lymphoedema United?

MH: Lymphoedema United was built on the basis on three core objectives:

1. Help others to live better with lymphoedema
2. Raise awareness of lymphoedema, especially getting men to talk
3. Raise money for selected lymphoedema charities 

The website www.lymphoedemaunited.com as with my book, stemmed from the lack of information and support I experienced in the early years of having lymphoedema. I wanted to create a ‘one-stop-shop website where anyone with lymphoedema, including those newly diagnosed, could visit to find all the key information about the condition, along with guidance from qualified medical professionals, especially on self-management techniques. This along with a panel of recognised lymphoedema experts, specialist product suppliers, established organisations and charities and of course the opportunity for members to share their experiences and tips to improve quality of life. There are many aspects to the website as well as exclusive benefits to members, including a discount code to redeem with our listed suppliers, special offers, quarterly newsletters and regular “What’s the Latest?” email bulletins. Membership is completely free of charge and 25% of annual profits will be donated to lymphoedema charities.

I had always planned to create a website alongside publishing my book and I was humbled that so many people from the lymphoedema community agreed to support both projects. The concept was to simply to unite all the key sectors together on one website for the convenience of those with lymphoedema. It costs nothing to join or to follow us on social media @lymphunited.

LS: What do you hope to achieve as a result of your charity golf day?

MH: I have organised a local golf day for 3 years, raising money for local charities including the Food Bank and the Kent Sussex Surrey Air Ambulance. A previous golf day I co-ran, raised over £8,000 for the Lymphoedema Support Group. I decided to apply the philosophy of Lymphoedema United with my other passion - golf, to organise a charity golf day whereby golfers with lymphoedema play alongside golfer from our specialist product suppliers.

Thanks to the financial support from our preferred suppliers, I am aiming for most of the entry costs to be subsidised for our golfers with lymphoedema, to less than £50 per player. The day includes breakfast, 18 holes on a championship course, 2-course dinner, games, raffle, auction and no doubt a few laughs too.

100% of the profits taken on the day will be donated to the Lymphoedema Research Fund, contributing to their target of £250,000 to begin research into finding a cure for lymphoedema. So, in answer to your questions, I’d like to achieve everyone having a great time and uniting with others with lymphoedema and raising as much as we can for the charity. Although I have a target in my mind, I’m afraid I’m not declaring that publicly at this stage! If you are reading this and play golf and wish to support the day, please contact me at hello@lymphunited.com