LymphUnited eNewsletter

Volume 5
October 2022

LymphUnited eNewsletter

Volume 5
October 2022

Volume 5 – October 2022

Welcome to our fifth 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 report some of the highlights from the Lymphoedema Conference Season, including the LSN, BLS and The Leg Club. I also share an exclusive about the (ILF) International Lymphoedema Framework Conference 2023.

We hear from one of our members, Gaynor Leech, who tells us about her experience with a Comfiwave Breast Band from Haddenham Healthcare. To support Breast Cancer Awareness Month, our members can receive 15% off* all Haddenham compression bra products during October. See below for details.

I announce the winning members of an exclusive Free Prize Draw from LimbO and a Free Competition from EzyAs – Moore UK LTD. There is a new Free Prize Draw and Special Offer in October from Sock Shop, again exclusive to members.

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.

Lymphoedema Conference Highlights

September and October are usually when health care professionals attend conferences run by the British Lymphology Society (BLS) and The Lyndsay Leg Club Foundation, and people living with lymphoedema are invited to attend ‘patient based’ conferences run by the Lymphoedema Support Network (LSN).

I attended two of the three events as you will read, one as a delegate and one as a participant in five workshops. I have the pleasure of reporting the highlights of each event with you and share some exciting news about the next International Lymphoedema Framework conference in June 2023.

The British Lymphology Society (BLS) Conference was held at Yarnfield Park, near Stoke, from 3-4th October. The event is for Health Care Professionals (HCPs) and not people living with lymphoedema but this year there was a tremendous opportunity for the ‘patient’ voice to be heard. I approached the BLS earlier this year suggesting that it may be beneficial for the HCPs to hear first-hand what it’s like to live with lymphoedema, including both the daily physical and mental challenges. Pleasingly, this idea was well received and the BLS invited Gaynor Leech from L-W-O Community and I, to be part of five workshops on the first day of the conference.

The workshop was entitled “Understanding the patients’ agenda: the patients’ perspective”, with each of the five sessions running for 45 minutes, to audiences between 30-50 HCPs. The format was a brief introduction from the workshop hosts and BLS Trustees: Jane Board and Lorraine Brown, setting the objectives. Gaynor and I then gave a five-minute summary of our lymphoedema journey and our respective websites/support groups/book, before moving into a Q&A style interview, with some pre-prepared questions, followed by many questions from the audience.

Using the Whova app before the conference, the BLS posted questions in a poll to the delegates to find out what the consensus of opinion was from the delegates. These questions were then posed to Gaynor and I to explain our views from a patient’s perspective. Here are a few of the popular questions and I summarise our answers:

Q1. From a patient perspective; what are the key facts you wish every lymphoedema practitioner to know about living with lymphoedema?
A1. The physical and mental challenges. Wearing compression garments including donning and doffing. Our individual and personal needs in dealing with a lifelong condition/disease.

Q2. Is it necessary to explain the lymphatic system to patients?
A2. Absolutely, it will help us understand what has gone wrong with our lymphatics and why, before we buy into all aspects of the self-management plan. Knowledge helps patient empowerment. Patient and Practitioner is a two-way relationship to achieve the maximum benefits of treatment = a win win.

Q3. Can you give an insight into the psychological impact of lymphoedema on someone living with the condition?
A3. From a personal perspective Secondary Lymphoedema is completely life-changing and affects how you look and feel, often resulting in a loss of confidence and self-esteem and embarrassment. Clothes and shoes don’t fit and are difficult to buy the styles we would normally choose, meaning a change of image. It can take years to embrace it and not hide it from sight. Can lead to a loss in sexual confidence.

The objectives from the perspective of Gaynor and I, were to try and get across these four key messages to the BLS and HCPs, and I think we succeeded:
Understand Us – How are you? Check our mental wellbeing.
Educate Us – Tell us why wearing compression, movement, skin care help us
Train Us – Show us how to self-bandage and perform SLD effectively
Empower Us – Empower us to take control of our lymphoedema.

The feedback was extremely positive and beneficial for the HCPs to hear our honest accounts of the daily challenges we face living with this lifelong condition. I hope the BLS invite me back next year to represent men with lymphoedema.

The conference began with a controversial debate entitled “Manual Lymphatic Drainage should be offered as an essential component of lymphoedema management”. There were two teams presenting for and against arguments, although it was made clear it didn’t necessarily reflect their own personal views. The exchange of witty banter between the two sides didn’t detract from the importance of their respective points of view and when their case concluded, the decision was put for the audience vote. The outcome being 96 voted for and 87 against MLD being offered as an essential component and it was clear that the word essential was salient in the overall decision. My take on this is if the word essential was removed, then the vote would have been more in favour of the ’for’ and much less ‘against’.

Neil Piller, Director Lymphoedema Clinical Research Unit, South Australia, passionately and energetically presented on Tuesday about a very important subject entitled “Supporting patient self-management & empowering patients to positively impact their condition”. This echoed what Gaynor and I had been talking about during our workshops, so it was quite satisfying to know that we were on point – as they say! Neil encouraged the audience of HCPs to take it back to basics and focus on treating the individual holistically, physically and mentally. He advocated patients through clearance, to empty the abdominal and thoracic areas to aid lymph flow, advising deep breathing, yoga and Self-lymphatic drainage (SLD) before donning compression. We should focus on the things we ‘can do’ rather than what we ‘can’t do’ leading to a more positive mental attitude. Neil suggested introducing one treatment at a time and monitoring results, rather than throwing everything at the patient and not knowing which element works, which also applies to our own self-management techniques I feel. Other advice Neil offered to benefit patients was for us not to have a big meal three hours before bed, referring to the additional weight and pressure on our lymph system. He also mentioned that drinking alcohol could lead to increased swelling, and this needed further investigation. That wasn’t the best news I heard that day, but it’s worth knowing, I guess!

I am waiting to read about the conference highlights in the next BLS newsletter and I will be sure to pass on anything I feel would be beneficial to our members.

As a member, supporter and previous trustee of the LSN, I always try to attend their Annual General Meetings (AGM) and Patient Conferences, for several reasons. The first is to glean new information from the panel of medical experts and/or guest speakers from the lymphoedema sector. The second is to browse the products on show in the supplier’s exhibition area and the third, to meet other people with lymphoedema, especially men to share experiences and tips with.

The venue this September was superb. The National Army Museum in SW3 is one of London’s hidden gems, showcasing historical memorabilia, machines, uniforms and stories to entertain people of all ages. The meeting room downstairs was large enough to comfortably fit the 35 strong audience and led conveniently through to the supplier’s exhibition, with 6 companies presenting their products. After the formalities of the AGM, the Chair, Anita Wallace, introduced Professor Peter Mortimer who answered a list of pre-prepared questions from LSN members, plus a few from the audience.

As always, Prof Mortimer provided easy to understand explanations and answers to those questions posed, with his usual witty humour and charm. Here’s a few things I learnt:
Saunas and Turkish baths may not be suitable for people with lymphoedema, as heat makes blood vessels increase, releasing more fluid, which means the lymph system has to work harder to rid fluid.
If you have lymphoedema in your leg(s) it could result in needing knee surgery in later life. However, some surgeons won’t operate on the knee if there is lymphoedema present, due to a possibility of infection. If the surgeon does operate, however, it is advisable to take antibiotics before, during and after surgery.
Scientific investigation is determining the importance of the lymphatic system to our immunity/immune system. The lymph system absorbs fat into the gut system. If the lymph is impaired the fat doesn’t get dispersed as easily.

One clear observation was that I was the only male with lymphoedema attending the event. Is this indicative of the lymphoedema patient community? Judging by the number of men who have contacted me and joined Lymphoedema United, I don’t think so. So, chaps, let’s support the LSN by signing up as a member and attend future events to even up the numbers and get out voices heard! See our website for more information https://lymphoedemaunited.com/organisations/the-lymphoedema-support-network/

The next annual conference for the International Lymphoedema Framework (ILF) is being held in Nottingham, UK, from 13-15 June 2023.

My understanding is that historically the ILF Conferences have been predominantly for Health Care Professionals from all around the world.

This time, however, 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 and provide guidance, solutions and techniques to self-manage our lifelong condition. The ILF also recognise that it is vital to hear the patient’s voice throughout the conference, which is extremely important and bridges the gap between the Health Care Professionals and people living with lymphoedema. It is very exciting.

To fully prepare for this patient day, the ILF has created a Conference Advisory Board, bringing together many of the most experienced and knowledgeable figureheads from the lymphoedema community. I am honoured to have been invited to join this board and it allows me the opportunity to represent the voice of men with lymphoedema.

There will be more information about the ILF in future newsletters and email bulletins, including how you are able to obtain tickets to attend the conference patient day.

The long-awaited conference and gala dinner, planned for 27-29 September was sadly cancelled due to the financial situation at their chosen venue, Worcester Rugby Club, meaning they could no longer host the event.

Ellie Lindsay OBE said: “We are absolutely devastated that the Leg Club Conference and Gala Dinner 2022 has had to be cancelled at the eleventh hour. Please be assured that I will notify you immediately my PA Lynn Bullock and I have found a new venue in early 2023”.

“We have worked tirelessly to ensure that the event would be organised to our usual high standards, and we are both incredibly disappointed at the news that it must now be cancelled at such short notice at no fault of our own.”

I will report back to you in a future newsletter, after the event.

Breast Cancer Awareness Month

To support Breast Cancer Awareness Month during October 2022, Haddenham Healthcare is offering an exclusive offer of 15% off* all compression bras, to members of Lymphoedema United.

Haddenham Healthcare is offering a 10% discount at LymphShop off all compression bras during October 2022, *PLUS an extra 5% discount to members of Lymphoedema United, and Free Standard Delivery. Members must use the discount code LymphUtd to qualify for 15% off.

In addition, Haddenham will make a £5 donation to Breast Cancer UK for every bra sold during October 2022.

The offer includes the innovative Comfiwave Breast Band with its gentle compression, suitable for night-time wear or while resting at home.

Lymphoedema United is proud to support #BreastCancerAwarenessMonth

“Great product as I love the fact you wear it at night. It really has helped my lymphoedema” – Suzanne

Find out more about the Comfiwave Breast Band from Gaynor Leech L-W-O in this video and read her story on our Meet the Members page https://lymphoedemaunited.com/meet-the-members/case-study-of-member-13/

Also included in the offer are the Hugger bras from PrairieWear which provide comfortable support as everyday wear.

“I am extremely happy with this product and find it very comfortable for all day use., including for my fitness classes. I like that it does not alter my shape and looks more natural under clothes.” – Doris

Read the story of one Lymphoedema United Member who swears by her Hugger Bra.

T&Cs
Promotion valid from 1st October until midnight 31st October 2022. Promotion will be automatically applied to cart for eligible items (Hugger Bras and Comfiwave Breast Band). Lymphshop is only available to customers in the United Kingdom. Always consult your therapist before changing your treatment regime. Terms and Conditions apply. Lymphshop is a trading name of Haddenham Healthcare Ltd.

Free Prize Draw & Competition Winners

After the success of the Free Prize Draw in June 2022, to win a signed copy of my book, I approached a couple of our preferred suppliers to suggest running a free prize draw or competition for our members. So far, three companies have agreed to participate, with LimbO in August, Moore UK LTD with Ezy-As in September and SockShop in October. These are fun to run and they enable me to give away free products to winning members. Keep an eye out for our emails and social media posts in the coming months.

“Do you have Multi-Layer Lymphoedema Bandaging (MLLB) as part of your ongoing Decongestive Lymphoedema Therapy (DLT)? Personally, I found keeping the bandages dry while showering impossible, once using a bin bag! Then we found LimbO, a full-length waterproof sleeve for my leg which amazingly kept my bandages completely dry and at such an affordable price!” Matt Hazledine

Many congratulations to our three lucky winners drawn at random, who win a Free LimbO product: Jill Reeves, Christine and K.L.

Whether you require a LimbO for your arm or leg, there is a product available for your needs. Take a look at their range on https://lymphoedemaunited.com/meet-the-suppliers/Limbo/

“Is it me, or does it get harder to put compression garments as we get older? I wear a class 4S stocking and it’s a workout in itself! I’m always on the lookout for helpful donning and doffing devices. View the multi-award-winning Ezy-As range from Moore UK LTD on their Meet the Suppliers page of our website.” Matt Hazledine

To win an Ezy-As product, our members emailed to tell us about their challenges and current methods of donning and doffing their compression garment. Many congratulations to our three winners: Bobbie Minshull, Jo Watson and H.Kennedy.

Whether you or a loved one require compression for your arm or leg, there is an Ezy-As product available for your needs. Take a look at their range on https://lymphoedemaunited.com/meet-the-suppliers/moore-uk-ltd/

Sock Shop Winter Offer, Free Prize Draw & Product Endorsement

I’ve got loads to tell you about our friends at Sock Shop this month. Firstly, Lymphoedema United is proud to officially endorse the Sock Shop IOMI FootNurse and Gentle Grip brands. Our logo features on their website, which is incredible publicity for us and raises awareness of lymphoedema. https://gentlegrip.co.uk/

Special Offer – October
We all know that the cost of living has increased beyond all expectations, and we are all aware of the rising fuel costs. To help us to keep warm and heat our feet this winter, Sock Shop has provided our members with 10% off their Heat Holders range of socks during October 2022. By keeping our feet warm, it may mean we can turn the heating down a bit and save money! Please remember to use the member’s discount code LymphUtd when ordering online, visit heatholders.co.uk.

Free Prize Draw – October
We are running a Free Prize Draw during October 2022, for 6 lucky members to win a pack of 3 Sock Shop IOMI socks. To enter, just email hello@lymphunited.com quoting “Sock Shop Free Prize Draw”. It’s that simple! Watch out for our email during October.

Free Prize Draw – October 2022
6 lucky members of Lymphoedema United could win a pack of 3 Sock Shop IOMI socks by entering our Free Prize Draw during October 2022. Simply email hello@lymphunited.com with the message Sock Shop Free Prize Draw, from 1st-31st October 2022, to be in with a chance of winning. Six winners will be selected at random on 1st November 2022 and notified by email. No purchase necessary. Entries close at midnight on 31st October 2022 and entries after this date will not be valid. Good luck!

Product Endorsement
Why are we endorsing IOMI? Simply because I have worn them for a couple of years now and they do not cut in or cause an indentation in my calf, potentially reducing lymphatic flow. I have subsequently removed all my old socks, with the usual elasticated top, from my sock drawer. View their range on our website and don’t forget to use your discount code LymphUtd if you purchase online. https://lymphoedemaunited.com/meet-the-suppliers/sock-shop-iomi-footnurse/

October Special Offer
The cost of living has increased to the highest level in decades. Sock Shop Heat Holders keep you warm in the winter, meaning you could turn down your heating a bit and save money on your fuel bills. Lymphoedema United members benefit from a 10% discount on all Sock Shop products listed on our website and the Heat Holders range.

Please remember to use your discount code LymphUtd to qualify.

10% discount also applies to Sock Shop IOMI FootNurse, a range of specialised health and wellbeing socks designed to aid feet, ankles and legs and the Gentle Grip range.

Click here to see the latest Heat Holders YouTube video

Heat Holders is a range of socks especially designed to keep your feet super warm, whatever the weather. They’re scientifically tested to be the warmest socks available. The patented manufacturing process, along with Heat Holders’ special Japanese thermal yarn, ensures maximum warmth is held close to the skin, keeping your feet warmer for longer. In fact, Heat Holders socks have a TOG rating of 2.3, making them the warmest socks on the market, according to independent laboratory tests.

First introduced in 2008, Heat Holders are used and loved by millions of people in over 40 countries around the world. They’re ideal for anyone who has to work outside, such as builders, mechanics and market vendors, and can also be a big help to those with medical conditions or disabilities that affect circulation. They’re also perfect if you want to enjoy outdoor activities such as fishing, watching sport or just walking the dog on a cold winter’s night. Finally, they’re essential for a cosy night in – potentially helping to keep heating costs down – and also make great bed socks.
The socks are available in a range of styles, including stripe, pattern, lounge, sleep, slipper and longer styles to wear with boots or wellingtons. Recently, licensed versions have hit the market, so you can keep warm while proudly displaying your Star Wars fandom!
As well as socks, the range also includes thermal underwear, tights, leggings, hats, gloves, joint warmers, jumpers, blankets and more. So, no matter how badly you feel the cold, there’s a Heat Holders product that can help.
To learn more about Heat Holders and buy online, visit heatholders.co.uk.

Charity Golf Day Cheque Presentation

In June 2022, Lymphoedema United hosted their first Charity Golf Day to raise money for the Lymphoedema Research Fund, managed by St George’s Hospital Charity. In July, Matt Hazledine presented the cheque for £3,300 to Amerjit Chohan (CEO) and Professor Peter Mortimer.

Bitesize News

Available Now

Top Tip

 

Autumn is here and energy costs are rising! So wrap up warm, wear layers, go out for some fresh air, take some deep breaths and remember to keep moving.

 

 

Lymphoedema Research Fund

Target: £250,000

Raised: £138,393*

Date: 30th September 2022

* from all sources not just Lymphoedema United

 

Available Now

Top Tip

 

Winter is here, wrap up warm. My swollen limb gets colder than the other one. Wear layers and keep moving.

 

 

Lymphoedema Research Fund

Target: £250,000

Raised: £126,253

Date: 30th September 2022

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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.