Flow lymphoedema care

Lipoedema Ladies in the UK Needed for Lipoedema Footwear Project

Susan O’Hara is the Brand Principal for LegsLikeMine, LLC, based out of Oklahoma in the US.

Susan has stage 3 lipo-lymphedema, and she runs a startup company designing footwear to cater to the unique needs of women with lipedema who still want mainstream and attractive footwear. Susan also creates social media content to connect lipedema ladies with products and clothing that fit their bodies correctly and make them look as great as ladies feel inside and out. Visit her on legslikemine.com.

In her brilliant article for PhysioPod, Susan began, "One of my first memories of shoe shopping with my mother was quite entertaining at the time. As a five-year-old, I thought it odd when my mother, a petite and rather slim lady, attempted to put on a pair of, ‘fashion boots.’ When they didn’t zip, my mom yanked the boot off of her foot, yelled, “DAMMIT,” and threw it across the shoe store. Little did I know I would later experience the same fate of not being able to have boots that fit. But until then, I have witnessed this experience of the boot-throwing mother over and over through the years. "

Please read and share the article folks! Mary



https://www.physiopod.co.uk/lipoedema-footwear-project.shtml

Image description: “Lipedema Ladies in the UK Needed”. Two lots of ladies living with lipoedema, an abnormal adipose painful fat condition, show the backs of their legs. The legs on the left have a small overlay graphic of a United Kingdom flag. A small blue overlay circle on the legs on the right has the white wording “help us make sure footwear for us with lipedema fits properly and ‘small, paid engagement’ below it. The logo for ‘Legs Like Mine’ and the strapline ‘you are not alone’ is beneath this. Running along the bottom is the email address for more information [email protected]

Dear Jane - Long Haul Flights and Compression LONG HAUL FLIGHTS Do you wear brand new (tight) compression or older compression that would be more comfortable, Switching to new when settled in destination? …

It’s FREE to join as a member of Lymphoedema United and receive loads of exclusive benefits. Visit our website and sign up today! www.lymphoedemaunited.com/free-membership/

Are you interested in taking part in a research study looking at improving exercise prescriptions for people living with and beyond cancer?

Click the link below to find out more!

👉️ https://www.bath.ac.uk/campaigns/take-part-in-our-study-to-improve-exercise-prescriptions-for-people-living-with-and-beyond-cancer/

Flow lymphoedema care updated their address.

How to Effectively Talk About Pain with Your Doctor Doctors don’t always take pain seriously. Here’s how to get their attention and talk about chronic pain effectively.

I was honored to contribute to this blog post by Nancy's Point about chemotherapy-induced peripheral neuropathy (CIPN). CIPN is not a side effect that most people are aware of going into chemo, so education about the symptoms and treatment is crucial.

CIPN symptoms include numbness, tingling, shooting pain, balance problems, weakness and even constipation or urinary problems. It feels similar to your foot "going to sleep” after you’ve been sitting on it for awhile, but it can be much, much worse and CIPN affects the hands as well as the feet and legs.

You can find the full post on CIPN and how to manage it at nancyspoint.com/what-is-chemo-induced-peripheral-neuropathy-how-do-you-manage-it/.

Fluid and Sodium for Lymphedema « Lymphedema Blog In It’s Not Just a Swelling! – LYMPHEDEMA Joachim Zuther provides an up-to-date and comprehensive guide for specifically geared towards individuals affected by Lymphedema, their caregivers, and family members. 133 Images. Paperback and Kindle version

👩‍💻 Upcoming : "Lipedema: Cooling the Fire Within" with Dr. Karen Herbst

In this webinar, Dr. Herbst will explore theories on why is present in tissue and what patients can do to quench this "fire."

📆 Join us live on Monday, June 27th, at 12:30 PM EST. Attendees at the live event will have the opportunity to ask questions, which Dr. Herbst will address at the end of her presentation.

Register here: https://hubs.ly/Q01d-_580

❤️

THE WORST THING

The worst thing you can be is not fat,
or ugly,
or stupid.

The worst thing you can be,
is not different,
or awkward,
or ‘too much’.

The worst thing you can be,
unequivocally,
is locked in a prison of your own self-doubt,
riddled with insecurities,
afraid to venture out into this life,
lest the world see who you really are.

In short,
the worst thing you can be,
is someone else.

When you were only ever meant to be

you.

Donna Ashworth
‘I Wish I knew’: https://amzn.to/3JVMJlZ

Art by the amazing
Lisa Aisato

CPD with COPD.
Comedy and fun may be at the heart of what we do but education is too.
Did you know that we’re qualified to teach group exercise and now studying medical conditions for exercise referral so we can deliver more of our work to people who really need it?
All too often exercise is delivered in a boring and staid fashion which is why so many people say they hate it and avoid it like the plague.
We’re here to change that and make exercise accessible and fun for everyone. It’s a bloody good laugh too and filled with positive affirmations and confidence boosting vibes.
If you’ve recently been advised to take up regular exercise but are dreading the idea,
come and try it for yourself 💕

Be kind to yourself…… it the most important thing! 💜 talklipoedema

You are not alone! Unite with our lymphoedema community and sign up today, it’s FREE! www.lymphoedemaunited.com. Could you share your story? If so, get in touch

Womans Hour ‪10.00 am - 11.00 am Thursday 21st April‬. BBC Radio 4

Today’s programme will include a segment on Lipoedema, Liposuction and the consequences of the NICE review for patients.
Do try to listen in, either live today or on a replay

Sharie’s ready & waiting!

https://bbc.in/3K5dswq - link to episode

https://twitter.com/bbcwomanshour?s=21&t=XPHLgO-8Vv-Ta7RDMDa6UA

Love these bras. Great for a work out, great for breast oedema too x

What do you do to clear your head? We think running is the perfect balance to everyday life. You can work out and enjoy nature at the same time. AND you really don't need much: running shoes, a good sports bra, tights and a shirt. Laura Limberg
https://www.anita.com/shop/en/momentum-sports-bra-maximum-support-2.html

NICE - THE DECISION
(National Institute for Health and Care Excellence) publish Liposuction for Chronic Lipoedema Guidance - Interventional procedures guidance [IPG721]

NICE (National Institute for Health and Care Excellence) acknowledges that lipoedema is distinct from obesity and lymphoedema.

NICE recognises that lipoedema is common, under-recognised and extremely debilitating and considerably more prevalent in women than men.

NICE recommends that there needs to be more research to understand who would benefit most from liposuction, long term outcomes and Quality of Life (QOL).

NICE will review their guidance upon publication of future trials and research.

Lipoedema UK view

Whilst Lipoedema UK is disappointed that NICE are not yet in a position to fully recommend the provision of liposuction for lipoedema by the NHS we have been really heartened by the recognition that the committee gives to the impact that lipoedema has on peoples’ quality of life. We are also encouraged that it will review their position as soon as further research is published.

We have many positive stories from women about the improvement to their quality of life after liposuction along with the lengths they will go to, to fund liposuction. Many are captured on our website, in our case studies, and “Women in Dire Need” publications.

Our report to NICE “Non-cosmetic liposuction in the treatment of chronic lipoedema” highlighted many of the physical and mental challenges of lipoedema based on our 2021 survey of over 900 respondents.

Our thanks go to all our members and those who responded to our survey with their stories. These were powerful evidence which enabled us to help the NICE committee understand the need for better treatment options and led NICE to conclude that lipoedema is still under-recognised and can be “extremely debilitating””.

Furthermore, NICE make several references to lipoedema being distinct from obesity and lymphoedema; and acknowledge the limited range of treatment options for lipoedema at this time.

These are both important conclusions and we know NICE support our desire for better care for those living with lipoedema, and understand how hard it can be:

“The size and shape of legs and the resultant mobility issues and pain, can have a profoundly negative effect on quality of life and physical and mental health” NICE 2022

We recognise that there is currently limited long-term research data into liposuction for lipoedema and that NICE have rigorous criteria for the research that they consider meets their standards.

NICE do acknowledge the research currently published and have committed to reviewing their guidance after a randomised control trial in Germany is completed and published circa 2023.

What can you do?

Whilst the guidance from NICE doesn’t mean NHS funded liposuction being widely available, patients and their families can take heart from their endorsement that lipoedema is different to obesity, and their recognition that changes to diet and exercise are less impactful for those living with lipoedema.

We recommend that patients and families of those with lipoedema write to your MP (and/or MSP, AM or MLA) about the challenges you experience in living with lipoedema, as a personal story is incredibly powerful.

Encourage your representatives and healthcare providers to work with Lipoedema UK and the government to provide funds for research, improve the education and support available, and address the challenges of proving adequate NHS funding for conditions like ours.

Membership of Lipoedema UK helps increase the strength of our voice in improving treatments for those living with lipoedema.

Our passionate belief is that:

“together we can beat lipoedema and create a better Legacy for future generations of patients”

Lipoedema UK won’t give up - NICE Guidelines 2022 are just the beginning….

Link to full NICE report:https://www.lipoedema.co.uk/news/liposuction-for-chronic-lipoedema/

Can you incorporate a helpful diet for your lipedema or lymphedema condition? Lipedema and lymphedema diets can get confusing when it comes to what has been proven to work. Learn the most important components of nutrition here:

https://www.youtube.com/watch?v=8td2GxBProA

💯

Jane Wigg Lymphoedema Nurse Specialist provides a video of Self Care Advice for Arm Lymphoedema and Lymphoedema In General as part of our Day Three - joint LWO Community and PhysioPod UK Lymphoedema Awareness Campaign.

https://www.physiopod.co.uk/self-care-advice-for-lymphoedema-jane-wigg.shtml

Day 3 of Week and we're launching a new resource. The BLS Mythbuster: Share this with colleagues and patients because find an activity that helps their lymphatic system https://www.thebls.com/documents-library/lymphoedema-mythbuster

DAY 1 - Intro to Self Lymphatic Drainage This is "DAY 1 - Intro to Self Lymphatic Drainage" by Jane Wigg on Vimeo, the home for high quality videos and the people who love them.

Listen in on Saturday from 2pm to our patron Trisha Goddard as she kicks off week interviewing BLS's Rebecca Elwell live on air. What is ? What does your lymphatic system do and how can you keep yours healthy? https://tunein.com/radio/talkRADIO-s265666/

Have you registered for our events running in week yet? They begin on 6th March for with Dr Kristiana Gordon presenting “Lymphoedema: what everyone needs to know” https://event.thebls.com/Awareness-Week-22

Dealing with Lymphedema in the Home Office With so many cancer survivors working at home during the COVID-19 pandemic, we may need to assess how our shift to computer-based work affects limbs with lymphedema and make a few adjustments to the new routines to help ourselves out.

WIN! A LYMPHEDIVAS COMBO OF YOUR CHOICE Simply 'like' and 'share' our page to enter the draw. Last entries midnight 23rd Oct 2019. Drawn midday 24th Oct 2019.

A 10-Year Retrospective before-and-after Study of Lipedema Surgery: Patient-Reported Lipedema-Associated Symptom Improvement after Multistage Liposuction - PubMed Therapeutic, IV.

Cellulitis the most painful experience of my life, reports our founder, Matt Hazledine. Professor Keeley and Professor Moffatt provide trusted information about this serious and debilitating infection on our website www.lymphoedemaunited.com

Do You Hate to Exercise? 14 Strategies to Help Motivate I hate to exercise. This doesn't mean I don't do it. I love the way I feel when I'm done, but I'd rather my spend time doing something else.