You are NOT alone! Meet the Members’ Videos

To celebrate World Lymphedema Day and throughout Lymphoedema Awareness Week, we released recorded interviews with five members of Lymphoedema United to answer two important questions:

1. How does living with lymphoedema affect your life?

2. What Top Tip would you give to help others to live better with lymphoedema?

Each of our guests share their biggest challenges with the disease and provide a tip that has helped them to live better with lymphoedema, in the hope it helps others going through a similar journey.

I would like to thank Amy Rivera, Didi Okoh, Graham Rooms, Liv Lavander and Tom Neilson for taking the time to contribute to this project to support Lymphoedema Awareness Week.

Please visit our website to view their videos https://lymphoedemaunited.com/information/videos/ or visit our YouTube Channel (please subscribe) https://www.youtube.com/results?search_query=%40lymphunited

You can read their full stories on our website by signing in with your membership login details. https://lymphoedemaunited.com/meet-the-members/

If you would like to share your story and Top Tips, please contact Matt at hello@lymphunited.com

You are NOT alone! Uniting the Lymphoedema Community

I am very excited to share our latest project with you, with the aim of uniting the lymphoedema community. Yes, we do set ourselves some huge goals but I’m confident that this will be a success and will continue to build for months and years to come.

One of my key takeaways from our first Charity Golf Day in June 2022, was not the golf, or the money raised for charity. It was like-minded people with lymphoedema from all over the country, meeting up at one venue to relax and talk openly about their experiences living with this disease. I think that’s because we were in a safe space and were being listened to without judgement. We shared our stories about physical and mental challenges, plus tips and solutions that work for us. From this event, friendships have been made for life and many have met subsequently and regularly keep in touch.

This got me thinking. How could I expand this concept to help others, aware of those non-golfers who had difficulties travelling such distances to one central venue. The idea came to me to arrange a number of ‘Meet-ups’ around the country, where locals with lymphoedema could meet for tea/coffee and hopefully find someone they can call on when they need a friendly, understanding ear.

Would this be of interest to you? If so, read on…..

I contacted a few comrades and advocates from other lymphoedema groups to discuss my idea and I am thrilled that everyone was onboard to turn this into a reality. We now have, what I call, the L-Team! In addition to me, Matt Hazledine, the team includes Gaynor Leech from L-W-O Community, Tom Neilson from Lymphoedema UK Sufferers, Craig Solomon from Lymphoedema UK and Jam Bradley from Ladies Living with Lymphoedema UK. We agreed with the collective name Uniting the Lymphoedema Community and my 14-year-old daughter designed the logo, a beautiful butterfly. Can you spot the reference to lymphoedema?

Collectively we are aiming to each host a local ‘Meet-up’ w/c 19th April, in our respective areas, as a trial to see if this has legs. (ooooh, sorry!)

Just to make it 100% clear, these are not registered support groups. We are inviting people with lymphoedema to join us for tea/coffee at a convenient venue, with the intention of facilitating introductions to other locals with lymphoedema.

I, Matt, will be organising local Meet-ups in Kent from April to July, with venues to be confirmed in Maidstone, Ashford, Canterbury and Sevenoaks. The first trial was in Tunbridge Wells on 20th and 26th March. We had a total of 9 people turn up, with a few coming on both days. The feedback was very positive indeed, which prompted me to book Meet-ups in at The Mercure Hotel Maidstone on 18th and 22nd April. I hope this will also be successful, as I write this newsletter beforehand.

Craig will be organising Meet-ups in the North-East, Gaynor in the Midlands, Tom in Berkshire and we will be notifying you on our respective platforms and channels nearer the time.
Please keep an eye on social media and your in-box, as I will be sending information to our members of all Meet-up events planned as and when they are confirmed by the L-Team.
Wish us luck!

If you would like to host a local Meet-up, please email Matt at hello@lymphunited.com to discuss further.

You are NOT alone! Golfers (or loved ones) with Lymphoedema

“If you want to take your pump with you take it in the cabin as you really don’t want to lose it. I always take all medication and other medical stuff in the cabin. I use a rucksack. If you have any 1 or 2 Euro coins try to keep one on you as the trolleys in European airports all use coins. Some use 1 and some 2 Euro coins.

I prefer to travel to warmer countries now and always like to use the swimming pools. For this I take a couple of older stockings with me which I wear in the pool or sea. I also take water shoes as it’s important to protect the feet, so you don’t stub your toes on a rock or stand on a sea urchin. I wash the stockings out very well after use and hang up to dry. I then put on my normal stocking (I wear class 4). I am never without a stocking.

Always take moisturiser and after sun. My leg never sees daylight as even sunbathing I always have a stocking on and often a towel over as well, protecting the toes which are open. Really don’t want to get bitten by any nasty little beasties so an insect repellent is very handy, if a bit smelly.

I also take a course of antibiotics with me. My GP lets me keep a packet at home so I can immediately act on cellulitis.

I have a sunflower lanyard which means you have a hidden disability and most airlines will board you first if they see it. This prevents standing in corridors or on stairs waiting to board. You can also go through the screening fast track with this.

Make sure you are well hydrated. We always buy extra fluids in the airport. (Really looking forward to when we can take our own liquids through again.)

I always sit in the aisle seat so I can get up easily without bothering other people and move around. I prefer to be on the right-hand side so that I can stick my left leg out into the aisle when no one is moving around, giving me extra room to move it. I wait for the toilet to have a long queue and then join it giving me a good excuse to stand up. I also do foot movement to keep the blood flowing through.

The most thing to remember is you’re supposed to enjoy yourself. You have as much right as anyone else to have a holiday. And if people stare at your lymphoedema arm or leg, use it as a chance to educate.”

The International Lymphoedema Framework (ILF) Conference is being held at The East Midlands Conference Centre in Nottingham, UK, from 13-15 June 2023.

The ILF is very keen to invite people living with lymphoedema to attend the new ‘Patient Day’ on 15th June. This promises to feature expert speakers providing valuable information to help us to better understand lymphoedema. They will provide guidance, solutions and techniques to self-manage our lifelong condition.

Tickets are limited so don’t delay. To register your interest please email conference@lympho.org

Their inspiring programme has been prepared with plenty of possibilities for gaining new knowledge and sharing experiences about lymphoedema and related disorders, plus networking opportunities with health care professionals and other people with the condition.

Speakers include: Prof. Peter Mortimer, Prof. Vaughan Keeley, Dr Kristiana Gordon, Alex Munnoch, Denise Hardy, Jane Wigg, Dr Karen Morgan, Cheryl Pike and many more.

To attend the patient day a £15 registration charge is payable. Refreshments and lunch will be provided.

For further information about the conference, visit the ILF website click here

https://www.lympho.org/patient-day

For more information about many of the speakers and the ILF, visit our website

https://lymphoedemaunited.com/meet-the-experts/

https://lymphoedemaunited.com/international-lymphoedema-framework/

We are supported by many lymphoedema charities and now they need our support!
It has been well-publicised that many charities have received less money from financial donations and fundraising events in recent years, due to the Covid-19 pandemic and lockdown restrictions.

One of my core objectives when I set up Lymphoedema United, was to raise money for selected lymphoedema charities. I pledged that 25% of annual pre-tax profits would be donated and I am grateful to be in a position whereby both my book and website have made a small profit in the first year!

Could you make a donation or organise a fundraising event? Most of these charities can help you with ideas and provide fundraising packs to support your event. Visit our website to find more information about these charities and organisations, including how they can support you.

https://lymphoedemaunited.com/supported-charities/

To make a donation, click on your preferred charity on our website for convenience, and it will take you directly to the ‘Donate Now’ page on their website.

https://lymphoedemaunited.com/supported-charities/