LymphUnited eNewsletter
Volume 9
October 2023
LymphUnited eNewsletter
Volume 9
October 2023
Volume 9 – October 2023
Welcome to our ninth 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 EXCITING news about the launch of our new book “Lymphoedema United – You are NOT alone!”, including an interview with my co-author, Amy Rivera. I am delighted that one of our members, Adrian Rawlinson writes an article exclusively for Lymphoedema United. There is also news about the LSN Christmas cards, our annual charity donations and our Charity Golf Day 2024.
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.
New Book “Lymphoedema United – You are NOT alone!”
Inspired by the number of people who have shared their stories about their lymphoedema journeys on our website https://lymphoedemaunited.com/meet-the-members/ an idea came to me for my next book. During a Teams call with Amy Rivera, a well-known and dedicated lymphoedema advocate from the USA, it became apparent that we had a common goal; to create a book with guests from around the world with various types of lymphoedema, to share their story with challenges, solutions and top tips to help others to live better with lymphoedema. We started this project in November 2022, with the aim of launching in October 2023, two years on from the launch of our first books, and here we are!
Please help us to spread the word!
So what’s it about?
Lymphoedema affects millions of people around the world, yet it is often a lottery whether the appropriate level of healthcare is received. That can leave a person living with this lifelong disease feeling desperate, neglected, and alone. You are NOT alone!
Amy Rivera and I, Matt Hazledine, lymphoedema advocates, are joined by 34 people living with lymphoedema from 14 countries from around the world, who share their personal experiences and top tips, to help you to live better with lymphoedema.
Donations to charity
Amy and I feel strongly about raising money for lymphoedema charities, as you probably know. We are in talks with Professor Christine Moffatt of the International Lymphoedema Framework, for advice on how we can support people in developing countries, who don’t always receive the help and care that they need. We pledge to donate a proportion of annual pre-tax profits to help these causes.
Where can you buy a copy?
The book is available from both our websites, Amazon and all good bookstores.
https://lymphoedemaunited.com/books/
https://www.winourfight.org/books
Book Introduction with Matt Hazledine & Amy Rivera
It has been an absolute pleasure working with Amy Rivera to create our new book, Lymphoedema United – You are NOT alone! I don’t think it’ll be the last time we work on a project together, that’s for sure.
Please scan the QR code or click on the link to watch the short video from Matt and Amy, discussing more about our new book. https://youtu.be/ZwVQD3WWTKY
You can read more about Amy’s incredible story on the Meet the Members section of our website https://lymphoedemaunited.com/meet-the-members/
For further information about the magnificent work that Amy does for the lymphoedema community, please visit her website www.winourfight.org
From patient to patron – how I became a ‘Lymphomaniac’ by Adrian Rawlinson
“My journey started in 2013 after surgery for cancer which quickly led to secondary Lymphoedema in my right leg. My GP in Ulverston, the Lake District market town where I live, made me aware of Denise Hardy and the Kendal Lymphology Centre. She in turn introduced me to Matt Hazledine, which is how I met Professor Peter Mortimer, who coined the phrase ‘Lymphomaniac’. All brilliant people I should add….
Following the Lymphoedema United Golf Day in 2022, (which I highly recommend as an event not just for golfers, but for all who are interested in learning more about the awful disease that is Lymphoedema, not golf which is a mere affliction), I met Prof Mortimer at St George’s Hospital. I asked him, more out of frustration than anything else, what was being done about Lymphoedema; he quickly replied with equal frustration; “Not enough!” which prompted me to ask if there were other patients like me that were curious and interested in trying to do more to help.”
“In addition to Matt, Gemma Levine from the patient community has done a fantastic job of raising money for the Lymphoedema Research Fund (LRF), in addition to going to extraordinary efforts to raise awareness of lymphoedema. Their work led to my offer to support both of them this year with their brilliant efforts to raise awareness and money for the Lymphoedema Research Fund.
From my perspective there are three fundamental core problems:
• There is a North / South divide in UK healthcare
• Living with Lymphoedema is worse than being diagnosed with cancer
• Lymphoedema awareness, understanding, research, education and treatment has lagged behind because it is not an attractive proposition to many medical professionals and funding decision makers.
Raising awareness will hopefully lead to improved understanding, action and much more dynamic and effective implementation at some point in the future. The biggest task is to try and compress the timescales.
But as we move towards 2024, I am optimistic that the combined efforts of likeminded patients and medical experts, aka ‘Lymphomaniacs’, might lead to a unique opportunity to try and reshape the future, drive the strategic direction in the UK and generate a sustainable research fund for Lymphoedema that can and will make a difference, especially towards helping younger people, because they are our future.”
Comment from Matt
Adrian has become a good friend, met through Lymphoedema United and our Charity Golf Day. He is both committed to, and delivering on his promises to, support the Lymphoedema Research Fund and the wider lymphoedema community. I am proud to be working alongside Adrian on a new project with Professor Mortimer, which will be reported on in a future newsletter.
You can read Adrian’s story on our website https://lymphoedemaunited.com/meet-the-members/
Christmas is coming! Order your LSN Greetings Cards now!
The Lymphoedema Support Network (LSN) has done it again, providing a beautiful Greetings Card, for us to buy and send to loved ones to celebrate Christmas. The ‘Sparkly Wreath’ is an eye-catching design of winter foliage with ‘Season’s Greetings’ written on the front and is printed on high-quality light-coloured card. The wording inside the card reads ‘With best wishes for Christmas and the New Year’.
123mm x 123mm in size, a pack of 10 costs only £5, including UK postage and packing. They can be purchased via the LSN online shop www.lymphoedema.org/shop or by contacting the office to pay by credit/debit card.
This is the ideal opportunity to really help support the LSN to raise much needed funds and enable them to continue their valuable work in helping people with lymphoedema.
To find out more about the LSN, click here https://lymphoedemaunited.com/organisations/the-lymphoedema-support-network/
Lymphoedema United – Donations to Charities
At the end of July 2023, Lymphoedema United Ltd completed its second trading year. As promised, 25% of pre-tax profits from the website and my book ‘How to Live Better with Lymphoedema – Meet the Experts’ was to be donated to lymphoedema charities.
I am delighted to announce that the following donations have been made to the following charities:
£1,208 to the International Lymphoedema Framework (ILF)
£307 to the Lymphoedema Research Fund, managed by St George’s Hospital Charity.
This is in addition to £6,070 raised at our annual charity golf day.
In the first two years of trading, we have raised £11,455 to support lymphoedema charities. Thank you for supporting Lymphoedema United and purchasing my book.
To find out more about the charities we support, click here https://lymphoedemaunited.com/supported-charities/
Charity Golf Day 2024 – Save the Date!
Our two Lymphoedema United Charity Golf Days have raised an incredible £9,370 for the Lymphoedema Research Fund. Next year’s event has a lot to live up to!
The day provides golfers with lymphoedema and their loved ones, to meet and play golf with senior management from our suppliers, in addition to meeting others living with lymphoedema, in a relaxed and enjoyable setting. Friendships have been made for life!
Our third charity golf day will be at The Belfry in East Midlands on Thursday 6th June 2024.
Full details are on our website https://lymphoedemaunited.com/information/charity-golf-day/
Once again, we have secured some excellent speakers, including two Professors who specialise in lymphoedema treatment and one of the country’s most experienced therapists.
As usual, there will be games, putting competition, raffle, auction, in addition to breakfast, golf and dinner, plus of course, lots of fun and laughter.
100% of profits raised will be donated to the Lymphoedema Research Fund.
If you are interested in the event and wish to reserve your place, please email matt@lymphunited.com as places are limited.
Bitesize News
Available Now
Top Tip
Top Tip:- You are not alone! Lymphoedema can affect mental and physical wellbeing. Unite with others who really understand. Where are they? Our new book, online support groups, local groups and our website https://lymphoedemaunited.com/meet-the-members
Lymphoedema Research Fund
Target: £250,000
Raised: £160,330*
Date: 30th September 2023
* from all sources not just Lymphoedema United
Available Now
Top Tip
Top Tip:- You are not alone! Lymphoedema can affect mental and physical wellbeing. Unite with others who really understand. Where are they? Our new book, online support groups, local groups and our website https://lymphoedemaunited.com/meet-the-members
Lymphoedema Research Fund
Target: £250,000
Raised: £160,330
Date: 30th September 2023
Follow us on:
www.lymphoedemaunited.com
Helping you to LIVE BETTER with LYMPHOEDEMA
Medical Advice Disclaimer
DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE
All material on this website is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment.
Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regime and never disregard professional medical advice or delay in seeking it because of something you have read on this website.
Reliance on any information provided on this website, by our employees and others appearing on the website is solely at your own risk.
For the avoidance of any doubt, Matt Hazledine has lymphoedema and is not a medical professional.