LymphUnited eNewsletter

Volume 4
July 2022

LymphUnited eNewsletter

Volume 4
July 2022

Volume 4 – July 2022

Welcome to our fourth LymphUnited eNewsletter, which includes a variety of subjects that aim to share experiences and help you to live better with lymphoedema.

In this issue, I introduce my new series of videos that are posted on the new LymphUnited YouTube Channel. After much encouragement, I decided to record my experiences of living with lymphoedema for 11 years now, in the hope that my tips will help others living with this lifelong condition.

We meet one of our members, Graham Rooms who purchased a LymphaPress machine as a result of the 14-day Free Trial that we ran in January. Graham tells us how he’s getting on with his compression pump. He is joined by Naomi Northen-Ellis, Director of Compression Therapy UK to introduce their products.

I share the highlights of our first ever Charity Golf Day and announce the winners of a Free Prize Draw during Lymphoedema Awareness Week, who won a signed copy of my book.

We hope you find this interesting and informative. Most importantly, we hope there will be something that you find beneficial to improve your quality of life.

Ultimately, this newsletter is for your benefit. Therefore, I would welcome your feedback or any requests you have for future content. Contact me at Hello@lymphunited.com.

A Short Story by Matt Hazledine

Since being diagnosed with lymphoedema in June 2011, I have done lots of different things to raise awareness of this lifelong condition including organising charitable events, writing an article for the Daily Mail Good Health section, appearing in interviews on radio, webinars, newsletters, blogs, social media, lymphoedema conferences, creating a patient-based website and writing a book. During the past 11 years though, there is something I have really struggled with and that was wearing shorts in public and showing off my compression hidden swollen leg! I know, in the greater scheme of things this isn’t life-changing news, is it? Well, I’m almost embarrassed to say, it was for me. The thought of people staring and asking questions, made me feel visually different, uncomfortable and a bit vulnerable if I’m being honest. I had tried so hard for many years to hide my lymphoedema and to just look ‘normal’ again. The thought of putting myself on show and attracting the wrong sort of attention was not on my radar. Where I had been for too many years was in the safety of my comfort zone.

That was until I read ‘Drop the Skirt’ from a wonderful lady in the US, Amy Rivera. She tells of her traumatic challenges of having lymphoedema from birth, without diagnosis for 30 years. Her leg was 200% bigger than the other and she hid it behind her skirts for many years. A brief conversation with her then colleague changed her views about her appearance and she made, what turned out to be, a life-changing decision by ‘dropping the skirt’. This was a turning point for me and I promised myself that this year, I would swap my summer linen trousers for shorts and let people see the real me.

This year…that wasn’t really setting a deadline and could be open to procrastination! At the Lymphoedema United Charity Golf Day (see Story 4), I met David Jailler, who has lymphoedema in his right leg, with almost exactly the same back story to me. He plays and coaches tennis in the UK and abroad and he is practically always in shorts. He was surprised to hear my reservations about getting my legs out and after a much-needed lecture, sorry I mean motivational talk, I agreed that I would wear shorts with friends first and then in public.

As you know, we have had quite a heatwave recently and knowing I had to travel for 2 hours there and back to see my fascia and RLD therapist, Karen Windsor, on one of the hottest days so far, I decided to go for it and wear shorts on my journey to East Grinstead High Street. I walked tall, felt liberated and have, as they say, pulled the band-aid off! Thereafter, I have worn shorts outside on several occasions and will continue to do so. My fear of being asked about my swollen leg or compression stocking, will be met with a positive response of me explaining the condition briefly, in the hope I can continue to raise awareness of lymphoedema, educate people who may know someone who has it and point them in the direction of the helpful resources available on my website. You never know, I may sell an extra book or two!

If you relate to my story and haven’t had the courage to show off your swollen limb in public, I really understand. There will come a time when you are ready to wear shorts or a T-shirt without the fear of people staring. For me, it was with the help and inspiration of Amy and David that made me take the first step. I hope my story helps at least one person to rip off the band-aid too. It’s not as bad as we probably fear it to be. Go get ’em and be yourself! In the words of the Greatest Showman song – ‘This is me!’

“My Experiences and Tips – Video Series”

By Matt Hazledine

It has taken me years to put my head above the parapet and talk publicly about my journey with lymphoedema. Yes, I have written about this in my book ‘How to Live Better with Lymphoedema – Meet the Experts’. Yes, I’ve had a full page spread in the Daily Mail Good Health section. Yes, I’ve been interviewed by the BLS, Haddenham for their Newsletters. Yes, I’ve written about made-to-measure clothes in the LSN Lymphline magazine. But apart from all that, I have kept away from videos and Facebook Live events. That is until I received a long email from a lady in Cornwall, providing welcomed feedback about my book and website, but then strongly advised that I become more visible in the lymphoedema community by producing a podcast or videos.

This was very much outside of my comfort zone, even though I am very experienced and comfortable with public speaking at conferences and team meetings etc, the thought of video was daunting to me. Why? Because mistakes and stuttering may not come across as professional. Then it dawned on me. That’s perfectly acceptable because it shows I’m human and not a rehearsed performer. So, I posted a few short snappy videos on social media in the Spring and they got a reasonable reaction. This gave me all the encouragement I needed, so I set about planning a series of videos, of which 6 have been recorded as I write this, released weekly every Friday and posted on our new LymphUnited YouTube channel that my 13-year-old daughter helped me to set up.

Each video is between 10 and 15 minutes long, so as not to bore people and I explain my experiences of living with lymphoedema and provide tips that may help others, as they have done for me. Subjects include: Early signs of Lymphoedema, Cellulitis and Diagnosis, the Physical and Mental impact of Lymphoedema, Where to find Help, Finding the right Therapist/Expert, Self-Management techniques, Challenges and solutions for clothes and shoes, compression garments and useful products, Compression pumps right through to the different types of surgery, of which I’ve had Lymph Node Transfer and Liposuction twice, all on the NHS.

If you would like me to cover any particular subject about living with lymphoedema, then please email me hello@lymphunited.com
Please visit and Subscribe to our LymphUnited YouTube Channel by clicking here.

Podcasts

So, that’s videos taken care of, now onto Podcasts. Where to start? I didn’t have a clue! Ellie Lindsay OBE, Founder of The Lindsay Leg Club Foundation has asked me to record a Podcast episode for her series. My subject is ‘Living with Lymphoedema – regarding positivity and mental wellbeing’. I agreed to do this earlier in the year and this week I received a nice, polite reminder asking if I am still prepared to do my podcast episode. Well, as I’ve learned very quickly in the lymphoedema community, if Ellie Lindsay asks you to do something, then you jolly well have to do it! So, tomorrow I embark on recording my very first Podcast. It may take several attempts but I’ve told you I’m doing it, I’ve told Ellie I’m doing it, so, I have to jolly well do it! You never know, it might inspire me to do more and create my own Podcast series. Watch this space, as they say!

Do let me know what you think of my videos and Podcast. I have broad shoulders and welcome honest, constructive feedback. I hope you find them interesting and useful.

Compression Pumps – Are they worth the investment?

By Graham Rooms – Member of Lymphoedema United and Naomi Northen-Ellis

By way of an introduction, Graham has recently joined the Lymphoedema United community, by sharing his personal experience on the Meet the Member’s section of the website. His journey with lymphoedema started in December 2019, shortly after having surgery for aggressive prostate cancer. Please log in with your membership details to access his full story. https://lymphoedemaunited.com/meet-the-members/case-study-of-member-10/

In January 2022, Compression Therapy UK ran a special offer for members of Lymphoedema United who could apply for a 14-day Free Trial of a Compression Pump. This was extremely successful, and Graham applied for the trial and was so impressed he purchased a machine. Graham tells us why shortly.

Naomi then introduces their product and Nainesh Vasistha, MLD & DLT Practitioner, provides two more examples of happy customers.

14-day Free Trial for our Members – July 2022
I am pleased to share with you, that during July, Compression Therapy UK are repeating the special offer of a 14-day Free Trial once again. If you are interested in finding out more, please contact naomi@compressiontherapyuk.com and mention your membership discount code LymphUtd to qualify.

Without further ado, let me introduce Graham and Naomi to explain more.

LYMPHA PRESS OPTIMAL PLUS – Case Study by Graham Rooms

I’ve had my Lympha Press Optimal Plus machine for about 6 months now and it has already become a must have to my lymphoedema management collection.

At first, I was dubious as to whether I could justify an investment as it isn’t a cheap item of equipment, but those fears were quickly irradicated after seeing the results following treatment. Whilst some patients may experience instant results, especially those who have later stage lymphoedema, I would urge users to experiment with the various settings/functions/durations to see what works best for them. The 14-day trial that Compression Therapy UK offer provides a great opportunity to do this without making a financial commitment.

After experimenting with the settings, I found the sequential and gradient function worked best for me and the wearing of my Comfiwave abdominal band and hip/thigh garments provided additional benefits to my treatment.

The 24 chamber Lympha Pants I purchased work in harmony with the machine and provide crucial overlapping chambers which ensures there are no gaps within the compression cycle. The pants include 3 heavy duty zips which allows the garment to be tailored to the users size and swelling. The garment is extremely well made with robust stitching and easy to clean material.

The Bluetooth connectivity makes it easy to control and change settings during use, especially if you are self-administering treatment using the Lympha Pants or LymphaPod.

The pre and post therapy functions are also unique and an important part of treatment. The pre-therapy mode prepares the proximal area to receive lymph fluid before the main treatment starts, and the post-therapy mode allows you to focus on a specific area after the main treatment has finished. For my condition this an essential inclusion and one many other compression machines do not include.

For anyone thinking of purchasing a Lympha Press product I would highly recommend speaking with Naomi from Compression Therapy UK. Naomi’s first and foremost concern is to make sure the product is suitable for you, hence why she encourages interested parties to take up the 14-day trial. At no time did I feel obligated or pressurised to purchase the equipment and Naomi helped with different settings and durations to meet my personal requirements. Naomi is both compassionate and caring to individual circumstances and the aftercare she continues to offer provides reassurance that if I experience any problems, she will be on hand to help.

Naomi Northen-Ellis, Director of Compression Therapy UK

For 40 years, Lympha Press®️ has produced the most well-regarded dynamic compression therapy products for treatment of Lymphoedema and venous insufficiency. 

The innovative, unique and patent protected overlapping garments are world-famous for their state-of-the-art design, high quality, optimal treatment and comfort.  At Compression Therapy UK Limited we are proud to be the exclusive distributor of these pioneering products in the UK and Ireland. 

Compliance is the key to successful treatment and the Lympha Press®️ garment design enables easy and comfortable use for consistent and effective treatment at home or in clinics and hospitals.  But don’t just take our word for it – on an almost daily basis we get tremendous feedback. Take up the offer of the free trial (and free shipping for orders placed during the month of July 2022) and find out for yourself how good it really is!

On an almost daily basis we get great feedback from patients using the Lympha Press and below are 2 studies from more challenging presentations that we hope demonstrates the collaborative approach we have with patients and their MLD therapists.

CLAIRE, aged 54 

Stage 4 cancer in breast, liver and spine. Developed lymphoedema August 2021 in right arm and chest wall. Measured for class 2 compression sleeve by hospital. No MLD or other support provided. 

Started course of MLD x 2 sessions per week for 3 months, continuing with weekly MLD Lymphapress®️ trialled September / October 2021. 

Claire initially experienced pain in upper arm and chest wall, probably due to metastases, when first starting to use the Lympha Press®️. However, the Lympha Press®️ came into its own when no compression garment could be tolerated, and arm swelling needed to be managed. The heaviness in the arm prevented Claire from practising Qi Gong and there was restriction in extension and external rotation of her arm. The combination of MLD and daily use of the Lympha Press®️ enabled Claire to have some pain relief and feeling of normality.

From a therapist perspective the Lympha Press®️ has been invaluable to Claire between MLD sessions., The lympha Press®️ even travelled to Scotland and back! And with daily use the compression pump has been helpful in maintaining tissue softness in the upper arm where there was fibrosis, numbness and pain. Lymphatic drainage has improved by use of the Lympha Press®️ – is an excellent device in reducing limb volume, encouraging lymph flow and improving tissue homeostasis. 

With daily use of Lympha Press®️ there is no fibrosis, minimal pain, numbness and reduced swelling. Right hand looks normal and Claire is so grateful for the device and more importantly the kind and caring support from Naomi.

PAMELA, aged 85

Endometrial cancer 2012 and full lymph node removal, developed lymphoedema in both legs. MLD, intensive multi-layer bandaging when legs became heavy and swelling increased; farrow wrap and class 3 stockings prescribed. 2018 right knee replacement.

Pamela moved to a care home November 202 and has been receiving weekly session of MLD.  Compression garments reviewed as difficult to put on by carers, Mobiderm lower limb for both legs prescribed.  Right knee in full flexion most of the time, pain on extension of the knee and unable to weight bear or stand. Walking hugely difficult. Left leg oedema present. Pamela used a compression pump previously – didn’t find any improvement and was rather sceptical of mechanical devices!

With gentle persuasion a Lympha Press®️ trial was due to start in March but covid hit the care home. The Lympha Press®️ trial started end May 2022.

Week 1 of trial – there were management and resident changes in care home so use of Lympha Press was somewhat ad hoc by care staff as new carers had not trained in how to use device. 

Week 2 of trial – Lympha Press®️ use was scheduled daily or at times 2 x per day. When carrying out MLD there was a noticeable change in the connective tissue. Fibrosis (tissue thickening) which would build up between weekly MLD sessions was noticeably absent, swelling was reduced and the right knee gained more extension. The “wrong trousers” as Pamela describes them, encouraged her leg to extend so that the Lympha Press®️ can do its job properly. 

Within 3 weeks of using Lympha Press®️ + ongoing weekly MLD – the right knee extension has improved and Pamela is now able to stand and weight bear, minimal fibrosis between sessions and limb volume noticeably reduced. Left leg looks almost normal for the first time.  A very happy Pamela!

These two client experiences were provided by Nainish Vasistha

Dr Vodder’s MLD + DLT Practitioner (Manual Lymph Drainage + Decongestive Lymphatic Therapy since 2004) Advanced Clinical and Sports Massage Therapist
BSc.Hons (London), Prof. Dip.BTEC6 (Brighton), ACMT, ITEC
MLDUK, MFHT, BLS, LSN, CThA
E: naineshuk@gmail.com  T: 07887 724181

 

Impressive markings are left after treatment whilst wearing my Comfiwave garments

Lymphoedema United Charity Golf Day 2022

On 8th June, a glorious summers’ day, we hosted our inaugural Charity Golf Day at the Hellidon Lakes Hotel, Golf & Spa in Daventry. With spectacular views reaching as far as the eye could see, a group of keen golfers set out after a hearty English Breakfast, with their golfing goody bags in hand to face the challenging 18-hole course. With healthy competition and constant smiles (aside from the bad shots!) the players of varying standards and handicaps, united to raise an impressive £3,300 for the Lymphoedema Research Fund.

Golfers with lymphoedema provided invaluable feedback about their challenges with compression garments with senior management from several supportive suppliers: Haddenham Healthcare, Compression Therapy UK and Thuasne. Perhaps, the most important part was the opportunity to meet like-minded people and making friendships for life with others who truly understand. Don’t just take my word for it…

Kirsty’s view “While the golf was really great, I think for me, the chance to meet Matt and others with the condition and to share stories and experiences was by far the most important and enjoyable aspect. I’ll be back next year looking to win though!”

David’s view “Thanks again for all the time and trouble you have taken to organise this fantastic event. I think I can speak on behalf of everyone who attended, it was absolutely brilliant and so good to meet other like-minded people to discuss and form a future friendship too. Thanks to you both very much indeed and I’ll start saving prizes now for next year’s event.”

There was a fabulous atmosphere and a delicious two-course meal, plus a game of Heads & Tails, another goody bag for everyone, an auction with unbelievable prizes, a raffle that went on for ages and of course the award ceremony for the winners of two longest drive prizes, three nearest the pin holes, third, second and the overall winner, an absolute gentleman, David Tyler Pictured here.

In addition to the golf, there was a fun putting competition using a bespoke game made by my dear friend Dave Vellacott.

We were delighted to welcome three speakers to our event; Garry Cooper-Stanton and Mike Mills, both providing extremely interesting information about their respective research programs into lymphoedema. Amerjit Chohan, CEO of the St George’s Hospital Charity then spoke about their purpose and objectives, in particular the work supported by the Lymphoedema Research Fund. Videos of Garry and Mike’s talk are on the LymphUnited YouTube channel for your information.

Many generous suppliers supported the day, with thanks to medi UK, Jobst, Sigvaris, LimbO, SockShop, Oxford Lymphoedema Practice and St George’s Hospital Charity. In attendance and with tremendous support was Haddenham Healthcare, Compression Therapy UK and Thuasne. Here’s what they had to say…

“What a special day Matt and the Lymphoedema United Team put on. The whole of the Haddenham team thoroughly enjoyed ourselves – spending time with wonderful people, sharing stories and laughs – and we also managed to fit in some golf. We can’t wait for next year!!”
Tom Wright. Managing Director – Haddenham Healthcare

“A fantastic event and such a welcoming and fun group of people. It was wonderful to meet some of the men and women who are living with Lymphoedema and to hear from the speakers who are pioneering the research into this all too common but overlooked condition. Next year I won’t just come to the dinner, I’ll be there for the Golf…as a caddy!”
Liz Markie. UK Marketing Manager – Thuasne UK Ltd

‘What a fantastic and fun day was had by all – so good to meet other people living with the challenges of lymphoedema and share hints and tips on management of the condition. The contribution from the experts at St George’s after the meal were a real bonus and I shall be happy to join one of the trials. If you were nervous about taking part this year, please don’t hold back in registering for the Lymphoedema United golf day in 2023 – you can bring your regular golfing partner along to play too as the day is open to all who have a connection to a friend or family member struggling with lymphoedema. I look forward to meeting lots of new people next year, each and every one of those who played this year has already signed up for the next one – we can’t wait!’
Naomi Northen-Ellis. Director – Compression Therapy UK

My biggest takeaway from the day was that this wasn’t really about the golf at all. It was about meeting other like-minded people with lymphoedema and us all making, what I believe will be, lifelong friendships.

If you are interested in uniting with us at next year’s event, please get in touch with me via email hello@lymphunited.com as there will be more on offer than the golf, that’s for certain!

Winners of the Lymphoedema Awareness Week – Free Prize Draw

March features Lymphoedema Awareness Week, where the whole community acts as one to educate and empower people with the condition, as well as raising public awareness. We at Lymphoedema United were extremely proactive across all social media platforms, posted videos, attended virtual conferences and I think our voice was heard loud and clear. We offered a signed copy of my book ‘How to Live Better with Lymphoedema – Meet the Experts’ to 6 lucky winners of our Free Prize Draw. Why 6? The 6th March is World Lymphoedema Day, so I thought it appropriate to give away 6 copies. The 6 winners were chosen at random using an online randomiser tool, which was very simple, using membership numbers from all our members as at 1st April 2022. I am very pleased to announce that the 6 winners are…

Winners of the Free Prize Draw for a Signed Book:-
Karen Cooper, Jacqueline Scoins-Cass, Steph Zealand, June Clarke, Beverley Pearce and NW from London.

Every winner has already received their signed copy and I am looking forward to hearing their feedback soon.

If you would like to purchase a copy of my book, please visit our website for details. It is available in most countries via Amazon.com in addition to Amazon.co.uk and direct from my publisher. 25% of profits will be donated to the Lymphoedema Research Fund.
https://lymphoedemaunited.com/book/

Bitesize News

Available Now

Top Tip

Summer is here! Protect your skin from insect bites, scratches when gardening, sunburn on your affected limb(s). Avoid infections, especially cellulitis which can be very serious. Have fun in the sun, just take care.

Lymphoedema Research Fund

Target: £250,000

Raised: £131,836

Date: 30th June 2022

Available Now

Top Tip

Summer is here! Protect your skin from insect bites, scratches when gardening, sunburn on your affected limb(s). Avoid infections, especially cellulitis which can be very serious. Have fun in the sun, just take care.

Lymphoedema Research Fund

Target: £250,000

Raised: £131,836

Date: 30th June 2022

Follow us on:

www.lymphoedemaunited.com

Helping you to LIVE BETTER with LYMPHOEDEMA

How to LIVE BETTER with LYMPHOEDEMA

The new book by Matt Hazledine is available to buy NOW!

25% of pre-tax profits from book sales will be donated to the lymphoedema Research Fund.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Become a member

Sign up as a Free Member to receive Exclusive Benefits, including access to Articles and Videos from the Experts, a Unique Discount Code from the Suppliers, Members’ Offers and a Quarterly eNewsletter with the latest news from the lymphoedema community.

How to LIVE BETTER with LYMPHOEDEMA

The new book by Matt Hazledine is available to buy NOW!

25% of pre-tax profits from book sales will be donated to the lymphoedema Research Fund.

 

 

 

 

 

 

 

 

 

 

 

Become a member

Sign up as a Free Member to receive Exclusive Benefits, including access to Articles and Videos from the Experts, a Unique Discount Code from the Suppliers, Members’ Offers and a Quarterly eNewsletter with the latest news from the lymphoedema community.

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.