PhysioPod review of Lipoedema Ladies 2nd BIG MEET UP at Leeds Park Plaza

"On September 21st/22nd 2013, Julie and I had the pleasure of exhibiting and demonstrating DEEP OSCILLATION at the Lipoedema Ladies AGM, their second Annual General Meeting or as they call it, the "BIG MEET UP....

Read on Press Release Point 8.10.2013

...It was truly lovely to meet the passionate, inspiring and glamourous "A" team of Lipoedema Ladies UK Support Group; aka Isobel MacEwan, Joanne Bird, Michelle Ellis (of Wingz) and Cara Jones.  All four ladies have Lipoedema and share in a very strong belief that they will, in their lifetime and with the help and support of worldwide healthcare professionals, find a "cure" for Lipoedema, not only for themselves, but for their daughters and grand-daughters too.

What is Lipoedema?

Lipoedema (NOT Lymphoedema) is a chronic, hereditary and genetic disorder of the adipose tissue (or body fat) which is both disfiguring and painful.  It predominantly effects women (although men can also suffer) from the age of puberty and beyond and sufferers may have a normal slim body shape and then suddenly, without changes made to diet or exercise regime, become fatter and fatter below the waist.   Hips and legs become hugely disproportioned to the upper body and in some cases, upper arms are effected too.  As Lipoedema progresses, additional, expanding fat cells interfere with the pathways of lymphatic vessels and sufferers can develop secondary Lymphoedema and it then becomes known as Lipo-Lymphoedema. The effects of Lipoedema on the patient can also cause great mental trauma for the sufferer.

Who are Lipoedema Ladies?

Lipoedema Ladies support ladies all over the UK with Lipoedema via a popular online website and private forum.  They raise awareness whenever and wherever they can.  The website includes articles on lifestyle, fashion, exercise and beauty, with dietary advice, tips and receipes.  Medical matters are addressed though specific advice should be referred to a local lymphoedema service or GP.  Lipoedema Ladies help in clinical trials and questionnaires for the NHS, private health companies and therapists and undertake the testing of therapies and treatments aimed at Lipoedema sufferers, for private companies and individuals.  Their aim is to bring awareness of Lipoedema to medics and the women living with Lipoedema who are unaware. 

Who are Lipoedema UK?

Councillor Suzanne Evans, Chair of Lipoedema UK

Lipoedema Ladies work closely with Lipoedema UK, whose board include Councillor Suzanne Evans as Chair, with Lead Research Co-ordinator Sharie Fetzer, both lipoedema sufferers. They have medical support from St Georges Hospital, including the highly-respected, Professor Peter Mortimer (Lipoedema UK Patron) and Consultant Nurse, Sandy Ellis. Lipoedema UK have a three-fold mission to:

• Raise awareness
• Promote good treatment
• Commission and fund research

Lipoedema UK have conducted the first patient survey ever on Lipoedema and the results will be announced  at The British Lymphology Annual Conference on 6th/7th/8th October in Birmingham to be held at the ICC.  The results of this will be crucial to help lobby the medical profession and the Government to initiate better care pathways, raise awareness and identify new research possibilities. As part of the conference, there will be a whole session set aside for Lipoedema & Obesity.  Catherine Seo Ph.D. will present at the Conference with other leading speakers on the subject.

Although Lipoedema was first recognised in the US in the 1940s by The Mayo Clinic, very little research has been done into the disease. It is not in medical text books or taught in medical schools and so few health professionals even know it exists. As a result, Lipoedema is frequently misdiagnosed as obesity and sufferers do not get the appropriate treatment or advice; and secondary health problems such as osteoarthritis, varicose veins, lymphoedema, eating disorders and disability develop all too frequently. The NHS recognised Lipoedema as a condition in October 2012.

The BIG MEET UP 2013!

The Two Day Lipoedema Ladies event began with a "Hello and Welcome" video message from Dr Karen L. Herbst Ph.D M.D Patron of Lipoedema Ladies.  Dr. Herbst was voted as one of San Diego’s top doctors in San Diego Magazine 2009 and in the "Guide to America's Top Physicians" in 2013.

Day One:

Guy Slater MBBS, FRCS, Consultant Surgeon, who specialises in laparoscopic surgery and bariatric surgery began the days events with a very interesting presentation on bariatric surgery and Lipoedema. He took questions from the ladies in attendance and was empathetic to their situation.

Jane Harding Msc., SRP, Macmillan Lymphoedema Specialist Physiotherapist spoke about the difference between Lipoedema and Lymphoedema.

Gudrun Collins (CTKI) talked about kinesio taping and its application to help alleviate the pain of lipoedema. 

After lunch, I spoke about the benefits of DEEP OSCILLATION® for Lipoedema and Lipo-Lymphoedema and as I was speaking, Julie worked her magic through the crowd with her HIVAMAT® 200 on the treatment trolley and her vibrating gloved hands.  She provided, several treatments during the talk and during the weekend, to arthritic hands and aching knees, swollen limbs and ankles, tense shoulders and painful backs. Sometimes immediate relief was given to areas of tenderness, acute pain and relief to the feeling of heavy “fluidy” limbs.

Nina Blakemore, Catwalk and Television plus size model and Speaker at the event on the second day, emailed after the event:

 “Thank you for the trial with the Oscillation machine - my legs have been "swishing" since the treatment, I really felt like it got everything moving once again and I felt like I was walking on air when I left - the "heaviness" that I so often feel in my legs was completely gone - truly amazing and very exciting!

On her feedback experience of the event on the Lipoedema Ladies website she wrote: "Mum and I had the absolute pleasure of meeting Mary and Julie  also -  two gorgeous sisters who were there with their Oscillation machine which I was lucky enough to have a demonstration with - I cannot tell you how I felt afterwards - it was like walking on air - my legs felt so light, I wanted to go out and shout it from the rooftops! It is so wonderful to know that a machine like this is available and that relief for so many sufferers can be found in this deep massaging technique"
 
I spoke about the benefits and clinically proven, physiological effects of the DEEP OSCILLATION® and I was happy to answer questions including how the way ladies could get treatment and how possibly come to acquire their own unit.  DEEP OSCILLATION® is provided by some NHS hospitals in the UK and Ireland, and by many Private Manual Lymphatic Drainage Therapists, See Therapist Listings  We advise all Lipoedema ladies to see a qualified MLD therapist using the therapy first for assessment and treatment to evalulate its effectiveness for them personally and to identify any possible contraindications.  On purchase of a unit, the therapist will demonstrate the way to work with the unit, initially opening and clearing lymphatic pathways ready for the increased lymph coming its way and how to work in the correct direction of lymphatic flow. To read the feedback I provided to Lipoedema Ladies click here.

Dr Alison Merrick was next up to talk about Bowen Therapy and how it may help Lipoedema. Her clinic have started a study into the effects of Bowen Technique on Lipoedema and would like to recruit some Lipoedema Ladies for their case studies, enquiries should go to Dr Alison Merrick PhD, alison@dralisonmerrick.co.uk

Workshops were held afterwards for ladies to learn and experience DEEP OSCILLATION®, Kinesio taping, Bowen Technique and Manual Lymphatic Drainage.

On the evening we had a lovely meal together in Chino Latino at Leeds Park Plaza where the AGM was held and some ladies took to the town.  Much fun and frivolity was had by all - a fabulous end to a very positive first day.

Day Two

To start the day, a skype conversation was held with a prominent member of Lipoedema Ladies who was unable to attend. 

We were then treated to the Premier of a Documentary "You Mean It's Not My Fault: Lipoedema, A Fat Disorder", by Catherine Seo. Catherine will be showing this at The BLS conference in Birmingham on October 6th and it will then appear on Lipoedema Ladies website for all to see, view now. Lipoedema Ladies are proud to be sponsoring Catherine to deliver the documentary at The BLS Conference and help raise awareness within the medical Lymphoedema community. 

Sharie Fetzer, Board Member of Lipoedema UK gave a wonderful talk on the benefits of exercise for Lipoedema and how she recommends swimming, walking and cycling for ladies suffering with Lipoedema and not high impact exercise like jogging and step aerobics which might worsen the condition and cause joint pain. To read more from Sharie about exercise in water click here

After lunch we had the fabulous Nina Blakemore talk about her career as a plus size photographic, catwalk and television model, who is passionate about promoting a healthy body image.  Surviving on an apple a day and two hours exercise to become an "acceptable" size 8 model led her to seek help, she now has more work as a healthy size 18 than she ever did as a size 8.

Nina then drew out the lucky winners for the Prize Draw.  Prizes included a two night romantic break for two at 94 DR Edinburgh with Dinner at an Edinburgh Restaurant, a pair of leather boots by The Bootmakers, Vouchers for Amazon, John Lewis, a Red Letter Day voucher, an E Reader, a personal nutrional advice voucher, a Radleys handbag and other lovely jewellery and smaller prizes. 

Amy Godfrey, a fat-bias comedian ended everything on a high.

Finally, the A team spoke about how far they had come and what they had achieved since they set up in 2010 and asked the audience for ideas about raising awareness. I suggested that Angela Mahandru, Editor of CHOICE Health & Wellbeing Magazine which {pp]] have featured in on several occasions, would be a great place to have a feature, as it has a very good readership.  I contacted CHOICE on their behalf on the following Monday and a feature, written by Lipoedema Ladies, will appear in the Nov/Dec 13 issue.

Key Announcements at the BIG MEET UP...

1    Sharie Fetzer announced that, 50,000 UK medical professionals will soon have access to an E-Learning module all about Lipoedema and Lipo-lymphoedema and so they will be able to diagnose the condition and advise on treatment at an early stage.  Education and research is key to finding a cure for this condition. It will be wonderful for ladies and their children, to not be given the mis-educated advice of “eat less and exercise more” and have access to the help they desperately need.

2    We also heard that Dr. Karen Herbst, The Lipoedema Ladies Patron and Catherine Seo, lipoedema advocate, are in conversations with Novartis, the largest biomedical company in the world. The director of research based in Basel Switzerland, and the lead scientist in Fat Metabolism are interested in pursuing a research study into lipoedema. The Research Director from Basel and Catherine will be meeting with Dr. Foeldi in Germany, the world’s expert in lymphology in November to further research possibilities. Once the research study is established, lipoedema fat tissue from liposuction procedures will be used in the research process. If you are planning to have liposuction, and are willing to have the removed tissue used to further research into a cure, please contact Catherine at catherine@lipoedema-simplified.org who is coordinating the efforts.

Julie and I looking forward to supporting Lipoedema Ladies and Lipoedema UK in anyway we can and to help make The Big Meet Up of 2014 an even bigger success.

Both Lipoedema Ladies and Lipoedema UK are 'not-for-profit' organisations and need donations to fund their valuable work.

To support Lipoedema Ladies please click here  - To support Lipoedema UK please click here