Dr Dirk Pilat, one of our favourite doctors and editor of the RCGP’s elearning course on Lipoedema, was invited on to Dr Mark Porters Radio 4 programme Inside Health on 23rd September to discuss lipoedema.
Lipoedema.co.uk is the only website for lipoedema that is recommended by Radio 4.
If you missed the programme here is the link
Lipoedema UK are incredibly proud to be the first UK charity for Lipoedema. We are dedicated to raising awareness of Lipoedema, advocating better treatment and our aim is to generate medical interest in the condition leading to new research. Lipoedema UK Board consists of women with Lipoedema and clinicians working in the Lymphoedema clinic at St George’s Hospital in London and throughout the UK. Our work includes educating doctors, health professionals and the public about Lipoedema and its symptoms. It is shocking that a disease first described in the 1940s is still so misunderstood and misdiagnosed. Most women have lived with the condition for decades before realising they have it. Our aim is to put Lipoedema on the medical radar, tackle misdiagnosis and help women get access to the treatment they need, much, much earlier. We aim to give factual information about the condition, advice on treatments and be a reliable source of information on the options available. We also understand how important emotional support is to cope with the everyday challenges that the condition creates. We have members of all ages from eighteen to 80. Our member’s conferences are a great way of meeting leading experts and making friends who understand your issues. Please support Lipoedema UK. It’s a herculean task ahead of us and requires substantial funding and effort. We would also like to hear your news and stories for our newsletter. To reach us, email firstname.lastname@example.org
Having officially launched Lipoedema UK at the 2012 British Lymphology Society (BLS) conference, we were delighted to be asked back in October 2013 to present the initial results of our Big Survey of people with Lipoedema – the first ever in the UK.
In 2013 a whole day of the conference was set aside for presentations and debate on Lipoedema, and our current Chair Sharie Fetzer and previous Chair Suzanne Evans did a joint presentation on some of the preliminary raw data from our survey of diagnosed women living in the UK.
It was a great honour to share a platform for a Q&A session with some of the leading UK names in Lipoedema research such as Dr Vaughan Keeley, and Dr Alex Munnoch, as well as pioneers from around the world. Netherlands researcher Joyce Bosman, who told us that of the 32m females in the UK she estimates that some 3.2m have Lipoedema. That was a shock statistic even for us! Other Lipoedema presenters included Dr Isobel Forner-Cordero, who is pioneering the treatment of Lymphoedema and Lipoedema patients in Spain and Catherine Seo the founder of Lipoedema Simplified in the USA.
Lipoedema UK appreciates the support and encouragement from members of the BLS, including many of the Lymphoedema nurses who run Lymphoedema Clinics in the UK and provide such a life-line for our members.
If you think you have lipoedema, but your GP has never heard of it, don’t despair. Lipoedema UK have sponsored a course which is now available to all UK GP’s and health care professionals FREE. Tell your GP or doctor to log on to: www.elearning.rcgp.org.uk/lipoedema by taking the course they will have the knowledge and skills to recognise and diagnose lipoedema. It will take them less than an hour to complete. If you live outside the UK, there is a small charge of £25 for the course. Spread the word! Change your life and the lives of others by encouraging as many health-care professionals to learn how to recognise the symptoms of lipoedema.
Is a truly remarkable book by Els Brouwer and Joyce Bosman from NLNet, the Dutch network of people with lymphoedema and lipoedema.
Els and Joyce wanted to break the taboo and show that you are allowed to be beautiful with lipoedema or lymphoedema. In the 28 impressive personal portraits, patients tell their story of how they deal with it together with a loved one or someone who is closely involved with them, such as a partner, mother, child, sister or therapist. All have one thing in common, lipoedema and lymphoedema always come uninvited into your life. The stories are very varied, and feature children, teenagers, women and men. The reader learns what lymphoedema and lipoedema involve and the effect the diseases can have on one’s life. But the book offers more. It provides background information and an introduction by Dr Robert J. Damstra. In this way, the book becomes more than just a book of beautiful photographs. It is a work of reference.
The MLD (Manual Lymphatic Drainage) practitioners are the unsung heroes for all sufferers of lymphatic diseases and we are so lucky to have so many of them in the UK. A great conference to mark their 20th Anniversary with doyens of MLD Prof Hildegad Wittlinger, Clare Maxwell-Hudson and Anne Vadgama.
Speakers included renowned experts including Dr Karen Herbst, our own Patron Prof Peter Mortimer, Prof Terrance Ryan and Professor Jean Paul Belgrado who demonstrated his techniques of tracing the results of massage on the lymphatics.
The amazing Edely Wallace, lymphatic yoga expert from Florida joined forces with Suzanne and Sharie of Lipoedema UK to spread word of her lymphatic yoga and the video she is producing exclusively for members of Lipoedema UK which will be available in June.
Thank you MLDUK for including us in this great event.
Many of the world’s leading lipoedema experts met in Frankfurt on March 16th, 2014 to share their knowledge of lipoedema and discuss how to establish clinical guidelines and a standard of care.
The meeting was hosted by Dr Stefan Rapprich and organised by Catherine Seo of Lipoedema Simplified and Felicitie Daftuar of the Fat Disorders Research Society. Sharie Fetzer, Research Co-ordinator, and Nurse Chris Wise of St George’s hospital, represented Lipoedema UK. Sharie and Chris were thrilled to meet many of the well known German surgeons and experts plus pioneers such as Dr Karen Herbst, Tilly Schmidt and Dr Joseph Dayan and Dr Mark Smith.
Catherine’s initiative to get so many experts together from such far flung places marks the beginning of new worldwide co-operation to share knowledge and improve treatments.
Thanks to everyone who took part in our Big Survey into Lipoedema. The survey is now closed and the results will be announced at our Conference & AGM on 7th June 2014. The preliminary data is already beginning to change the way the medical profession view lipoedema and is being used in the design of the elearning course for GP’s that The Royal College of General Practitioners are in the process of designing in partnership with Lipoedema UK.
Sorry if you missed Lipoedema UK’s 2nd AGM and Conference on 7th June 2014 in the beautiful rooftop conference suite of the RCGP, Euson Square, London. We all had a brilliant day, made lots of new friends, and are now busy spreading the word of the new elearning course to our local GP’s. Hope you can join us next year.