Newsletter Spring 2016
Welcome to the Lipedema Project, an organization dedicated to the fat disorder lipedema. Our mission is to raise awareness, provide education, support research, and encourage community engagement regarding lipedema. We offer information and support for women who think they may have the disease (lipedema affects women almost exclusively), as well as research and education about lipedema for clinicians who wish to better serve their patients.
Highlights from The Lipedema Project
Földiklinik – Hinterzarten, Germany
8 April 2016
Greetings from the Földiklinik in Hinterzarten, Germany. I’m a long way from my little nest in the Boston area. As I look out my office windows at the expanse of German houses and meadows, I reflect on the first time I visited Professor Földi. Februrary 27, 2013. It was a very cold, long drive through the Black Forest from Sonthofen to Hinterzarten. This was my first trip to Germany, and I had just filmed Dr. Stefan Rapprich performing lipedema liposuction on Jennifer Wright. My head was jumbled with so many questions. While my lipedema diagnosis helped explain the difficulties I had faced for over 60 years, the remaining cacophony of questions felt insurmountable.
My first encounter with Prof. Földi was through her book, Földi’s Textbook of Lymphology for Physicians and Lymphedema Therapists. More specifically, I had read Chapter 9, Lipedema, and was amazed by her seminal work on lymphology. Within 6 months I was sitting in her office filming with a long list of questions, trying to piece together so many unknowns. She answered my questions, one by one. I visited several other times over the past three years. Currently, I am at the Földiklinik supporting a research project on lipedema while receiving intensive conservative treatment. I feel blessed to be in the right place at the right time, engaged in exactly the right endeavors.
Much has happened in the past three years. Lipedema has gone from being totally unknown in the US to “beginning to make some inroads.” A few events leading the way include:
- Conferences in London, Australia, Germany, Sweden, and other European cities,
- International Gathering in Frankfurt Germany in March 2014
- The first online course for General Practitioners through the Royal College in London, spearheaded by Sharie Fetzer of Lipoedema UK in June 2014
- The 1st International Symposium on Lipedema held in New York City in April 2015
- Think Tank kick-off to viable research sponsored by The Friedman Center for Lymphedema Research & Treatment under the wings of Dr. Mark L. Smith in April 2015
- CME online course for physicians, as well as online course for women with lipedema seeking answers in April 2016
- The recent funding of a new center for fat disorders and the opening of the TREAT (Treatment, Research, and Education of Adipose Tissue) program at the University of Arizona Medical Center under the direction of Dr. Karen L. Herbst in January 2016
- And of course, the release of the documentary film, A Disease They Call FAT 2015-2016 (Look for it on iTunes and Amazon this summer!)
This “Movement” took more than a village to happen, it took a tribe of like-minded folks, the support and partnership from some amazing doctors willing to move things forward in the healthcare system, and women all over the world. And while I’d love to have more answers than questions, I’m reminded of one of my favorite quotes by the Austrian poet, Rainer Maria Rilke,
“Be patient toward all that is unsolved in your heart and try to love the questions themselves, like locked rooms and like books that are now written in a very foreign tongue. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps you will then gradually, without noticing it, live along some distant day into the answer.”
I envision living into the answers about lipedema from right here in Hinterzarten, Germany, through deepening conversations, treatment, and research. The questions on the wall here state “What causes lipedema?” and “What can CURE lipedema?” Stay tuned as the hopefully not too distant day comes when I can share those answers with you.
Catherine Seo, PhD
CoDirector, The Lipedema Project
Research Associate, Földiklinik
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Ambassador Spotlight: Katia Page, New Jersey
The Ambassador program grew from women all over the world stepping forward requesting to help spread the word. We are honored to have so many amazing ambassadors working with us to educate the public about lipedema. Each month, we will highlight one ambassador who has done exceptional work. It is the actions of these dedicated individuals that can have such a huge impact.
This month, we have chosen to highlight our New Jersey ambassador, Katia Page. Katia was diagnosed with stage 4 lipo-lymphedema two years ago. Since then, she has been fighting to promote awareness of lipedema so that others don’t have to suffer like she did.
Later this month, Katia will be presented with the Fannie Lou Hamer award for her lipedema advocacy and activism in the community. Katia has given speeches at various churches to educate about lipedema. She has also been sending letters to congressmen and senators to get co-sponsors for the Lymphedema Treatment Act. This federal bill will improve insurance coverage for lymphedema treatment supplies, such as doctor-prescribed compression, that are essential for lymphedema treatment. She has also been working hard to get funding for compression garments and supplies for women who cannot afford them.
Katia plans to hold events on June 11, Lipedema Awareness Day, in her area. She is also in the midst of planning a conference for lipedema in New Jersey. Join us in congratulating Katia on all of her wonderful work in the community!
Featuring Xpandasox with Founder Sharon Thorp
Sharon Thorp, founder of Xpandasox, doesn’t run your typical sock business. Involved in the legwear business for 26 years, Sharon has helped to design and sell a variety of fashionable sock lines. In fact, eight years ago, she founded Passione, a luxury legwear brand for women. As her business grew and changed, Sharon felt that it was time to move in a new direction, to provide something new and different to her customers.
While Passione socks were generally well received, Sharon periodically heard customers lament that these socks were too tight around their calves. It was this nagging complaint that sparked the idea of Xpandasox, unique socks with an expandable panel in the back to accommodate a larger calf size. Sharon quickly had a prototype made and realized that this new design could address her customers’ needs. She secured manufacturing and applied for a patent for Xpandasox. Patent pending status was granted in March 2015, and marketing for the brand commenced in full force. Soon after, Full Figure Fashion Week representatives approached Sharon about featuring her socks. Believing she had found her audience in the plus-size fashion industry, Sharon continued to market in traditional retail channels.
One day Sharon received a phone call from a satisfied customer. This woman explained that her mother, who had lymphedema, had found that Xpandasox were large enough to accommodate her swollen, afflicted limb. Sharon had never heard of lymphedema, but was touched to hear this story. The following week, Sharon received an order for Xpandasox from a company called Lipedema Products. Once again, having never heard of lipedema, Sharon called the company, spoke with the founder, and learned all about the disorder. Suddenly, Sharon had found that Xpandasox could serve an even greater purpose than she had thought. These socks could help women afflicted by lymphedema and lipedema.
Since Sharon has learned how her products can help women with lipedema and lymphedema, she has committed herself to learning more about these disorders and to designing more products to meet this community’s need. Currently, Xpandasox come in two sizes that fit shoe sizes 5-9 or 10-12 and that fit calves up to 24 inches in diameter. Xpandasport athletic socks and unisex crew socks are also available. Sharon hopes to roll out an additional larger size sock to accommodate wider legs, and she plans to soon venture into production of compression garments to work alongside the socks.
Feel free to contact Sharon at [email protected] for more information about Xpandasox. She would be happy to answer your questions and to hear your feedback and suggestions.
Upcoming Events in April
The following events are scheduled for April 2016 around the world. For more information, please visit our Events Calendar at lipedemaproject.org/events-calendar/2016-04
Film Screening: Our ambassador, Hatzy Joyce, has organized a film screening of The Disease They Call FAT. The screening will take place at the Mind Body Spirit Festival in Limassol, Cyprus on April 2 at 7:00pm. This is a wonderful opportunity to spread awareness of lipedema, and we are thankful to Hatzy for all of her hard work!
FDRS Conference: The next Fat Disorders Research Society Conference, entitled Living with Lipedema and Dercum’s Disease, will take place in St. Louis, Missouri on April 8-10 at the Marriott St. Louis Airport Hotel. Dr. Karen Herbst will give the keynote address, and topics will include surgical and non-surgical treatment options in managing both lipedema and Dercum’s Disease. The cost of the weekend for patients and guests is $195.
Meeting for Professionals on Lipoedema Awareness: On April 15, The Swedish Society for Lymphology and the Swedish Edema Association will host a meeting for professionals, policy makers, patients, and the public to increase knowledge of lipedema. Lectures will be given by Håkan Brorson, MD, PhD, Catherine Seo, PhD, CoDirector the Lipedema Project, Josef Stutz, MD, and Joanna Dudek, M.A. The event will take place from 10:00am-1:00pm at Oscar Church Hall in Stockholm, Sweden.
A Day with Lipedema in Focus: On Aril 16, Lymfödemföreningen Stockholms län will hold a symposium for professionals, patients, and relatives to learn about lipedema together. Interactive presentations will be given by Catherine Seo, PhD and CoDirector of the Lipedema Project, Joanna Dudek, MA and doctoral candidate at the University of Warsaw, Dr. Josef Stutz, MD, of Stutz Lipedema Services, Schwarzenbach am Wald, Germany, and Dr. Håkan Brorson, MD, PhD, Senior Consultant, of the Department of Plastic and Reconstructive Surgery at Skåne University Hospital. This event will take place from 9:30am-4:30pm in Solna, Sweden.
Presentation on Water-Jet Assisted Liposuction: On April 17, Dr. Josef Stutz will give a presentation on the WAL method of liposuction for lipedema patients and other plastic surgeons. The Swedish Association of Chronic Edema will host this event, which takes place from 9:30-11:30am at Central Hotel in Stockholm, Sweden.
FEELING BETTER LIVING IN YOUR BODY: Workshop on Releasing: On the afternoon of April 17, Catherine Seo and Joanna Dudek, M.A. will host a workshop on Releasing, a practice that can help you free yourself of self-imposed limits and discover your true nature of joy, peace, and happiness. This event takes place from 1:00-5:00pm at Central Hotel in Stockholm, Sweden.
About The Friedman Center
The Friedman Center for Breast and Lymphatic Surgery at Northwell Health in New York was founded in 2013. Its focus has been on offering solutions for patients with lymphedema, a debilitating condition that occurs in many patients after cancer treatment.
The Friedman Center’s scope of care now includes treatment for lipedema, a condition that can also result in lymphedema. To that end, the Friedman Center has created the Lipedema Project, a comprehensive program to increase awareness and provide education, research and treatment for lipedema. The Friedman Center is proud to sponsor the lipedema documentary, The Disease They Call FAT, the 1st International Symposium on Lipedema, the Lipedema Think Tank, the Lipedema Solutions Forum for women with lipedema in April 2015 and this online CME eduring materials course for physicians.