PhysioPod® UK Limited Review Lipoedema UK Conference and AGM 2015 ‘Hope on the Horizon'
A two day event, held in Reading, which gathered together leading experts in Lipoedema and for Lipoedema Patients, to learn about the latest research, the actitivites of Lipoedema UK, international 'think tank' plans and conservative and surgical treatment options with an emphasis on the importance of compression. A Patient Day followed, which included one-to-one appointments with Lipoedema UK's Nurse Consultants and a chance to try out therapies. DEEP OSCILLATION® was very well received.
Venues for The Lipoedema UK Conference and AGM 2015 and Patient Workshop
The Hilton Hotel and The Circle Hospital, Reading
On Friday 26th June 2015, The Lipoedema UK Conference and AGM was held at The Hilton Hotel, in Reading. The choice of venue was superb with great facilities, management and service. Day Two Patient Workshop was held at the highly impressive Circle Hospital; just a stones throw away from the hotel; making access most amenable for Lipoedema patients, those travelling to and for those staying at the hotel. The Circle Hospital had very kindly donated an entire Physiotherapy Clinic with several consulting rooms, a comfortable meeting room (with viewing facilities) and a gymnasium.
Sharie Fetzer, Chair of Lipoedema UK Provided a ‘Round-Up’ Of Activities of 2014/2015
What a hive of activity 2014/15 it has been for Sharie, trustees, members and consultants since last years successful Conference and AGM held at the prestigious Royal College of General Practitioners in London, where those in attendance learned the results of the BIG SURVEY 2014 carried out by Lipoedema UK and about the RCGP new e-learning module on Lipoedema
(N.B. This course is currently free to UK/Ireland Allied Healthcare Professionals, once completed please email firstname.lastname@example.org to ask to be included in the Practitioners register currently being compiled by the medical team at Lipoedema UK).
Lipoedema UK have spoken at and attended all manner of events including:
A sports disability forum
Christine Wise presented to The Circle Hospital's Physiology Department
Signs of Lipoedema, included in the "Blooming Marvellous" Poster presented at BLS
Lipoedema UK attended The British Lymphology Society Annual Conference and AGM 2014 at Birmingham NEC and presented their poster, "Blooming Marvellous" to conference delegates.
(Designed/printed courteousy of Chris Fickling Design and PhysioPod™ UK Ltd)
Lipoedema UK co-chaired
‘The 1st International Symposium on Lipoedema’
This event brought together Prof Etelka Foldi from the Foldi Clinic in Germany, Dr Mark Smith and Dr Bill Ripicci of the Friedman Center for Lymphoedema Research & Treatment, NY, Dr Stanley Rockson of Stamford University, Dr Karen Herbst, many experts from the field of lipoedema & lymphoedema plus researchers from the US and Europe and premiered Catherine Seo’s wonderful video ‘The Disease they call Fat’. The second day 2 was split into 2 separate events: a ‘Think Tank’ attended by medical experts and researchers and a Solutions Forum for patients and their supporters. Christine Wise, represented St George’s Hospital in the Think Tank and Sharie Fetzer of Lipoedema UK co-chaired the Solutions Forum. Nurse Consultant, Denise Hardy gave a presentation on behalf of UK Allied Health Care Professionals on Bandaging, Compression, MLD and CDT.
Lipoedema UK announced
£75 to end 75’ to raise research funds into finding a cure for Lipoedema
75 years is long enough for misdiagnosis and suffering!
Lipoedema was first identified 75 years ago (Allen and Hines,1940) but medical students are just not taught about it in medical school! It is often misunderstood and misdiagnosed as obesity, or Lymphoedema. The NHS recognized the condition in October 2012 and it is estimated to affect 11% of the female population. (Foldi F, Foldi M 2006 ‘ Lipoedema’). In fact, just 5% of GP's and only 1% of Chartered Physiotherapists know about Lipoedema (source BIG SURVEY – Lipoedema UK 2014)
Research into finding a cure for Lipoedema requires major funding.
If you would like to help please click below
Lipoedema UK Produce Patient and Healthcare Information Booklets
Lipoedema UK have now produced patient and healthcare information booklets and GP information packs to start addressing the lack of awareness and to help get patients quickly diagnosed and for early referral to get the treatment and support they deserve. For more information click here
NHS Approved Suppliers PhysioPod™ UK Ltd were also thanked by Sharie Fetzer for helping to spread awareness via Lipoedema PowerPoint presentations on their stands and chatting to Chartered Physiotherapists throughout England and Scotland about Lipoedema at the following events:
Next up at The Lipoedema UK Conference: LIVE STREAM FROM THE US
Live Stream From Boston, US: Catherine Seo, PhD and Co-Director of The Lipoedema Project spoke about the 1st International Symposium in NY which had the main focus of “If we could cure Lipoedema, what would we need to know?” Catherine also updated the audience with steps that have been taken since the Symposium involving five international teams:
- A new research protocol is in the ‘design’ process of looking into how adipose tissue differs from normal fat tissue.
- A comprehensive review of literature is underway to create a consistent diagnostic tool for Lipoedema, which is urgently needed.
- The proposed opening of ‘Centres of Excellence’ to promote a consistency in care, better outcomes for the patient and further research. (In New York, the first of its kind has been set up)
- It was identified that a databank of lipoedema information is required for researchers in order to to look for hereditary genetic markers.
- A research team is now testing conservative versus surgical treatments and which work best in the long term
European premier of Catherine Seo PhD
ground breaking film
‘It’s Not My Fault’
A quote from the film: “Respect for women is a right, regardless of their body size”.
Nurse Consultant for Lipoedema UK, Denise Hardy, outlined the importance of compression garments and getting the correct fit
Compression hosiery promotes venous and lymphatic drainage, so veins in the lower legs are encouraged to pump more effectively and lymphatic vessels are encouraged to remove excess fluid from subcutaneous tissues. They may also reduce the possibility of the onset of Lymphoedema, reducing discomfort by giving support to soft tissues and painful knees.
Badly fitting compression comments are described as: “hot, itchy, painful, difficult to get off"
Denise Hardy spoke at length about the importance of getting a perfect fit of compression hosiery and how they are now working with companies to achieve this.
Highlights of the presentation included:
- For patients who find it difficult to wear full length stockings or tights, that below the knee stockings with a pair of cycling, Capri or Bermuda compression shorts might be easier, or long line supportive underwear like the Bridget Jones ‘magic’ underwear for mild lipoedema to support the upper thighs.
- Emphasis was placed on patients trying different options until they found the perfect make, size and style. The shape of limbs, if a cuff effect is at the ankle, can make the fit quite challenging, so ideally garments should be made to measure, where off-the-shelf garments aren’t suitable.
- Denise invited representatives from the various hosiery companies to take the stage: Heather Wright from Sigvaris discussed the variety of compression hosiery they offered which are both sheer and elegant, patterned, coloured with fashion for all seasons including leggings.
- Care of garments: of particular interest to the audience was the information provided on caring for compression garments, washing at 40 degrees, not using fabric softner (it can weaken garment) not tumble drying or using harsh detergents. When cared for correctly, garments can last up to six months.
- Cautionary advice was given that compression garments should be removed in the event of numbness, discoloured digits or pain.
Dr Sarah Pledger gave an honest and enlightening perspective of how GP’s work and how to get the very best out of your appointment
Dr Sarah Pledger
“We do genuinely care about our patients but juggling new information and technology is challenging”
Highlights of the talk included:
"Most GP’s will not have heard of Lipoedema and will mistake it for Lymphoedema or obesity"
Tips for getting the best out of your GP included:
- Make a specific appointment: Time is precious and when only 10 minute slots are available - focus on Lipoedema as the reason for your visit.
- Acknowledge if you are overweight (2/3 general patients are overweight, including ¼ children under 5)
- Explain to the GP that even when when dieting legs remain larger than the rest of the body and that is not normal
- Take in the GP Information pack from Lipoedema UK with a postcard about the elearning module – "Don’t take in an article from The Daily Mail".
- Ask your GP about: Counselling, Referral to a Vascular Surgeon, a Lymphoedema Clinic, or Dermatologist.
- Dr Pledger suggested that seeing the practice nurse rather than a GP might be a good option if patients think they have Lipoedema
- One interesting suggestion was that oestrogen based contraception may impact on Lipoedema. HRT was also asked about but there is no evidence to support this currently. There is clearly a need for contraception/HRT/Lipoedema research.
Edely Wallace, visiting from Florida, provided an informative presentation entitled: Breathe to Relieve – Lymphatic Yoga
Edely’s explained and demonstrated to the audience how lymphatic yoga can support proper lymph flow, help purify the body, increase nutritional absorption and relax the mind. Her special techniques are a non invasive way of helping in the self management of Lipoedema. Edely asked for volunteers to take part in a 30 day research project which would hopefully provide clinical evidence to support her techniques.
Exercising In Water with Glenda Baum, Chartered Physiotherapist
Glenda Baum, Chartered Physiotherapist and inventor of Aqua Aerobics gave a short presentation on the benefits of exercising in chest high water for Lipoedema as water pressure is a natural compression. Glenda led ladies to the Hilton Hotel pool to show how easy it can be. She emphasized how you don’t need to swim, you can just walk or do simple exercises and the best bit of exercise in water is that you don’t ache afterwards unless extremely unfit.
Dr Kristiana Gordon and Professor Peter Mortimer of St George’s provided a general update and information on their Genetic Research and the next step..
- A study undertaken did not identify any one particular gene or genes that could be associated with Lipoedema but there is strong evidence of genetic predisposition. St George’s hope to further their research at how genetics, obesity, hormones and the lymphatic system can cause Lipoedema.
- It is clear that Lipoedema is not related just to X chromosome. Men can also be carriers.
- It was acknowledged that time and funding issues for research are a constant challenge.
- Dr Gorden says that latest genetic research shows every daughter with Lipoedema in family has a 50% chance of developing it.
- Professor Mortimer said that one of the biggest problems that medics face is diagnosing Lipoedema, there are no standard tests, no blood tests and no genetic tests.
- He also said that Lipoedema isn’t just about fat and that the skin is very different too
- Professor Mortimer said the key to controlling Lipoedema is diet and exercise and compression
Questions & Answers Time: The Medical Panel Included
Professor Peter Mortimer, Dr Kristian Gordon, Mr Alex Munnoch, Dr Sarah Pledger
- Knee Replacements and whether they reduced knee pain in Lipoedema
- HRT’s effect, if any, on Lipoedema (research needed on this and contraception)
- The possible link between Hypermobility and Lipoedema
- Racial and Ethnic occurrence of Lipoedema
- Can Liposuction eradicate knee pain?
- Alex Munnoch, Consultant Plastic Surgeon at Ninewells Hospital, Dundee (also Honorary Adjunct Professorof the Maquarie University, Sydney) took questions about the work he undertakes at Ninewells Hospital in Dundee where is carries out Liposuction for Lipoedema.
- Professor Mortimer said that liposuction for Lipoedema at the moment is seen by the NHS as cosmetic (Alex Munnoch commented that in NHS Scotland, liposuction is allowed for Lipodystrophy and that is what Lipoedema is).
- Leg weakness as a symptom was discussed, research in Holland suggests 30% less muscle strength in women with Lipoedema
An excellent questions and answers session with the Lipoedema UK panel brought the educational day to a close.
Patient Workshop at The Circle Hospital, Reading
- Films and presentations including a presentation from Danielle Wildstein from the Fat Disorders Research Society on their latest work.
- A talk about the importance of compression by Denise Hardy, Nurse Consultant for Lipoedema UK
- One-to-one patient advice & compression garment measuring with Denise Hardy, Christine Wise and Rachel Warth
- Knee Health Classes with Suzanne Evans with lots of tips
- Several Lymphatic Yoga Classes with Edely Wallace
- Mary Fickling, PhysioPod™ UK Ltd spoke about the benefits of DEEP OSCILLATION® - reducing pain, inflammation, swelling - see studies) also how it can help with arthritis and post liposuction and promoting the feeling of lighter legs. She also explained how patients can obtain a unit for self management. Three short videos of how DEEP OSCILLATION® is proven to permeate an 8cm depth, a patient testimonial and a video of how the therapy works, were all well received. Julie demonstrated the therapy to the attendees. Ladies also entered the PhysioPod™ UK Ltd prize draw to win a DEEP OSCILLATION® massage with their nearest therapist.
- Treatment sessions in the Consulting Rooms included DEEP OSCILLATION® massages from Julie Soroczyn of PhysioPod™ UK Ltd and MLD DLT Practitioner and Lymphoedema Therapist Marie-France Bewley, with 31 ladies receiving details of their nearest therapist on the Monday after the conference.
- Lympha Press and PhysioTouch also gave taster sessions
Other activities included:
Taking part in a survey on compression garments
Signing up for an MSc research study on ‘The impact of lipoedema on occupational performance’ by Ellen Kirby, an Occupational Therapist.
PhysioPod™ UK Ltd Acknowledgments:
A ‘well done’ and special thanks to all of those involved in organizing this large, informative and amazingly positive event. Our special thanks to the effervescent and helpful Chair of Lipoedema UK, Sharie Fetzer and her amazing daughter Amy, to the very knowledgeable Nurse Consultants of Lipoedema UK, Denise Hardy and Christine Wise, to Rachel Warth of Kendal Lymphology, to Suzanne Evans, Secretary of Lipoedema UK and to Margrit Mehta and Angela. These ladies possess such extraordinary calm and drive and are always such a pleasure to be work with.
A thank you also to Lipoedema UK sponsors: Haddenhams, BSN, Sigvaris, H&R Healthcare, Credenhill, Daylong who now offer a patient online postal prescription service and they can check the GP’s prescription against the measuring MLD Practitioner’s letter, ensuring everything is in order - what a great initiative Daylong! And of course to St George’s Hospital Trust. A further thank you to The Circle Hospital for their kindness in donating their facilities.
A big thank you to Alex Munnoch and Dr Anne Williams for their constant support of PhysioPod™ UK Ltd
Food throughout the conference was absolutely delightful as was the company, Mary and Julie enjoyed an early breakfast with Denise Hardy and Rachel Warth, spent a lovely evening with Tess and Michael from Lipoedema Ladies and enjoyed catching up with Isobel, Pamela and Michaela of TALK Lipoedema. Thank you all. Mary and Julie. x
Delightful sweets at The Hilton
Michael and Tess of Lipoedema Ladies
Michaela, Isobel and Pamela of TALK Lipoedema
About DEEP OSCILLATION® - if you want to read more...
The DEEP OSCILLATION® Personal SPORTS used by patients with Lipoedema and Lymphoedema is designed for self management, ideal to take as hand luggage
From Michelle Ellis, Chair of Lipoedema Ladies:
"I have my next liposuction session in November, this time it is my arms being treated. I will have with me the very portable DEEP OSCILLATION® personal unit. The personal unit is small and light enough for my hand luggage, so perfect for my greatest times of need – air travel. The added benefit of being able to choose another programme to treat different conditions that a member of my family might have, and forgoing a trip to a specialist is wonderful." Read more
DEEP OSCILLATION® through the tissue layers to a clinically proven depth of 8cm
DEEP OSCILLATION®, developed by Physiomed Elektromedizin in Germany is an internationally patented therapeutic design which utilizes the forces of pulsed electrostatic attraction and friction to provoke oscillations, which act deeply on the tissues of the body from the epidermis down through the conjunctive and adipose layers and into the muscles. Hernandez Tapanes et al (2010) were able to prove, by diagnostic ultrasound, penetration of the oscillations up to an 8cm depth (see diagram). Observed physiological effects of the therapy include oedema resorption - Jahr S Et Al (2008) The therapy also limits the production of inflammatory mediators, especially during the treatment for chronic pain and more so during the treatment of fibromyalgia - Janik, H. et al (2010) strengthening of the cutaneous tissues - Korkina Et Al (2007), stimulation of the wound healing process Mikhalchik E, Et Al (2005), Trybulski R (2008).