Worldwide Ambassador Program
Meet the Lipedema Project Ambassadors
The Lipedema Project Ambassador Program is a worldwide network of women, most of whom have lipedema themselves. These amazing women have joined together to spread awareness of lipedema and help create communities of support around the world. Please feel free to contact the ambassador in your area for support, resources, and information.
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”
~ Margaret Mead
Rebecca L. Griffeth has a BS in Family and Consumer Sciences/Early Childhood Education and a Master of Church Ministries/Christian Education. She has served several congregations of the United Methodist Church in Texas, Tennessee, and South Carolina during her ministry. She is currently a Volunteer Coordinator with Open Arms Hospice, a ministry of Bon Secours St. Francis Health System. Rebecca first learned about lipedema in March of 2015, and attended the Lipedema Symposium in NYC the following month. She has since worked hard to learn about the condition, get diagnosed, and manage her lipedema and lymphedema. Rebecca brings creativity and determination to her role as Director of the Ambassador Program and under her leadership the word about lipedema continues to spread to all corners of the globe.
Rachel is Administration Manager of the Lipedema Project and Assistant Director of the Ambassador Program. When she is not working, you will find her running, strength training, practicing yoga, or cooking delicious vegan meals. She also works as a group fitness instructor and is a member of Out of Range, a post-collegiate a cappella group that performs in and around Somerville, MA. She writes a healthy living blog with vegan recipes and fitness tips, www.fitfoodiefiles.com.
Tess manages social media communication for the Lipedema Project and is the Lipedema Project Ambassador in the UK. She promotes, educates, and informs about lipedema issues using Facebook, Twitter, and other social media channels. Tess has a broad background as a development and training manager, administrator, and event organizer. She is an artist, songwriter, and poet. Tess has Stage 3 lipolymphedema, and she is dedicated to helping other women avoid the difficulties she has faced. We affectionately refer to Tess as Our Social Media Goddess.
Anna is from Bulgaria and is 32 years old. All her life, she has been struggling with her weight. At times she was very slim, yet the lower part of her body was bigger and more difficult to get in shape in comparison to other girls. When she recognized that she had the symptoms of lipedema, she was relieved, as a lot of questions were answered, but also scared. She hopes that through the Ambassador Program, she is able to find more resources and treatment for herself, and to help many other women who felt like her.
Jennifer is a 31-year-old single mother of two amazing little boys. She was diagnosed with primary lipedema in the beginning of 2014. Since then, she has been advocating throughout Ontario to help women’s voices be heard, and to find the proper help that all lipedema patients need with this disease. She has been welcomed into a local news station on a regular basis, as well as local newspapers, and has had the pleasure of sharing her journey with the community at fundraising and informational events around her city. She is honored to be a part of this project. Her wish is to help as many women as possible who are suffering from this disease, and to ensure that no one ever feels as alone as she did when diagnosed with lipedema.
Kelly observes that lipedema seems to be a mystery to most of the medical community in Ontario. In speaking with ladies in various chat groups, she finds a consensus that doctors, nurses, RMTs, fitters, and the public at large do not understand lipedema. It is much easier to blame lipedema patients for not exercising enough and not eating properly than to acknowledge they have a medical condition. Furthermore, the effect on patients’ self image can be devastating and lead to permanently damaged relationships and severe depression. Kelly would like to help educate the medical community and provide support to those with lipedema so that compassion and understanding prevail rather than false judgments.
Hatzy is a complementary therapist, specializing in manual lymphatic drainage (Vodder) and CDT. She helps her clients to improve their health through reflexology and aromatherapy. Specifically, the Bach Flower Remedies help them achieve emotional balance and gain confidence. Hatzy has Stage 1 lipedema, which developed during peri-menopause, and she would like to help others realize that they are not fat, but actually have lipedema.
When Diana was 25, she went from fit, healthy, and slim to gaining 60 pounds within three years. When searching for a reason for the weight gain, a phlebologist diagnosed her with Stage 2 lipedema. Soon after, Diana started a countrywide petition in Germany to have liposuction approved as a treatment covered by health insurance companies. She has had three liposuction surgeries with Dr. Heck. She also began a lawsuit against her own health insurance company for not paying for these procedures. She now acts as the international representative of “Lipödem Hilfe Deutschland e.V.” and is the founder of www.lipödem-fitness.de, in addition to being one of the German Ambassadors for The Lipedema Project.
After the birth of her second child, Janine noticed a change in her body, both physically and hormonally. For almost three years, she went from doctor to doctor, engaging in various diets and exercise programs, yet her weight went up. Still, Janine feels relatively lucky to have received her diagnosis of lipedema in the arms and legs and lymphedema in the legs earlier than so many other women she has met. After her diagnosis, she drove immediately to rehabilitation and learned a lot about the disease and its treatment options. Still, she experienced a lot of ignorance from both doctors and patients, and she wants to try to help change this as an ambassador.
Mareike is 37 years old and lives in Grossalmerode near Kassel, Germany. She has been dealing with lipo-lymphedema for four years now. Along with fellow German ambassador Christine, she participates in a support group to help other women with lipedema. She is proud to serve as an ambassador for The Lipedema Project to extend her support work.
Margit was always skinny, but had a disproportionate size, with a S/M waist and L/XL lower body. After cortisone therapy, she gained a lot of weight in a very short time, and her legs were heavy, swollen, and very painful. In January 2012, she was diagnosed with Stage 2 lipedema. Now she has a combination of lipedema, phlebedema, and lymphoedema in Stage 2-3 of the legs and Stage 1 lipedema of the arms. Three times a week, she has 60 minutes of lymphatic drainage, and she wears flat knitted compression stockings.
Sara is a Canadian of Ghanaian decent and a recent graduate of Algonquin College’s Business Marketing Program. Her career includes several roles, such as media presenter, marketing coordinator, event coordinator, and production assistant. As the ambassador for the Lipdema Project, Ghana, she serves as a voice for both men and women that have lipedema, or that may know someone that has the disease.
Joanne qualified as a physiotherapist in 1997. For the majority of her career, she has worked in the field of oncology, and she specializes in recovery after a cancer diagnosis. She became a Manual Lymphatic Drainage Therapist in 2009, training in the Leduc Method of MLD, and she attended a Fluoroscopy Guided MLD training (FG-MLD) in 2015. She has her own private physiotherapy practice, and in addition to providing MLD and Physiotherapy, she is a qualified Aquatics Teacher and Speedo Aquafit Shallow Water Fitness Instructor.
Tilly was born in the Netherlands and now resides in Almere. After struggling with her body weight and pain since age 11, she found out in 2003 from an MLD therapist that she has lipedema. After discovering how difficult it was to find information on Lipedema, she started a website in 2004 to help women all over the world learn about lipedema and know they are not alone. In 2014, the Fat Disorders Research Society presented her with an award for starting to build awareness of lipedema all over the world. Tilly believes it is important for Lipedema patients to stay positive and to stay in control of their own lives.
Joanna is a psychologist and nutritionist who specializes in contextual behavioral therapies such as Acceptance and Commitment Therapy (ACT) and Functional Analytic Psychotherapy (FAP). She conducts research on psychological aspects of living with lipedema as a PhD student at the University of Social Sciences and Humanities in Warsaw. In her free time, she enjoys listening to live music, long walks and meditating.
Renata lives in Hermanus, a beautiful coastal town in South Africa. She is a level 5 Qualified Therapeutic Neuro Reflexologist. She has suffered from lipedema since the age of 16 and is now Stage 3. She is 53 years old and menopause does not make it any easier, nor does the heat in summertime. She is so grateful to be part of the Lipedema Project and is looking forward to making a difference with all of the lovely ambassadors. Every small step becomes a beautiful journey.
Esther is a 31-year-old Spanish engineer. Born with lipedema, she spent her childhood facing the incomprehension of the health community and of others in her environment. Trying to improve her condition, she went through every kind of diet, sports, and procedure with poor success, which resulted in frustration and psychological distress. As of today, she has had her first WAL intervention, and she’s waiting for the next one. As the Lipedema Project Ambassador for Spain, she supports her community by spreading awareness about the disease among those affected in Spain and among medical professionals.
Margareta was diagnosed with secondary lymphedema after surgery and treatments for Non-Hodgkins lymphoma. She is now Chairman of the Swedish Association of Chronic Oedema (Svenska Ödemförbundet). The organization strives for the implementation of optimal diagnostic, treatment, and management methods for all oedema diagnoses. The association is in partnership with ILF, the International Lymphoedema Framework.
Zeynep is the ambassador of The Lipedema Project Turkey and has been working with Catherine Seo as part of the internship program since July 2015. After working with two international textile companies in Turkey as a product researcher & developer and product manager, she came to the United States in 2012 to improve her English. She obtained her bachelors of science degree in management studies from Cambridge College in 2015. Her studies focused on marketing, management, and customer service.
Diagnosed with Stage 2 lipedema in 2014, Ursula finally found the answer to her life-long dilemma: why can’t she lose weight on her lower body? She had to quit her modeling career due to her increasing size, which caused her tremendous mental suffering in addition to the physical pain associated with the disorder. Ursula is now a CSR Consultant based in the UAE and aims to spread awareness about lipedema within the local populace. She hopes to have it recognised as a genuine lymphatic disorder in the country, thereby enabling treatments to be covered by insurance.
Marlene is a native Californian and has Stage 2 lipedema. Growing up, her dream was to travel the world. She served in the United States Army and boot camp while she had lipedema, and fought through that difficulty with determination. She is a caregiver, a mother, an analyst, a cat lover, and a world traveler.
Jana lives in Colorado and is a Senior Manager at Avaya, a worldwide supplier of telecommunications products. She is the proud mother of DeziRae, Jacob, and Gabe, and wife to Andy. After struggling with pain in her legs for years, her vein doctor referred her to a physical therapist for lymphedema in the fall of 2014. It was there that she first heard the word lipedema. She thus began her search to learn everything she could and to pass this information to others. She is committed to spreading the word so that others can get diagnosis and help.
Cat lives in Volcano Village on the Big Island of Hawaii, one mile from the most active volcano on earth. She is an animal activist and has spent the last 15 years operating a nonprofit animal rescue and no-kill sanctuary. She has recently started Hawaii Lipedema Awareness with the goal of educating the Hawaii medical community and the public about lipedema. She is so grateful to be part of The Lipedema Project as Hawaii’s Ambassador.
Katia is the New Jersey ambassador for The Lipedema Project. In April 2014, she found out that she had Stage 4 lipedema and lymphedema, and she thus began the journey to save her mobility and life. Katia decided to step out of the shadows and help promote awareness because she doesn’t want anyone to suffer like she did. She believes that getting diagnosed early is the key and that equipping yourself with as much knowledge about this disease as possible will save you.
Lilith is a wellness coach, addiction specialist, clinical hypnotherapist, Reiki master teacher, and aerobics instructor from Coos Bay, Oregon. She has an extreme case of Stage 4 lipedema and lipo-lymphedema in which all her limbs are affected in addition to her trunk, feet, back, hands, butt, face, chest, and scalp. She has had three WAL liposuction surgeries with Dr. Stutz in Germany. She enjoyed a happy, full, athletic life and didn’t know she had an illness until age 49. Now just three years later, she is disabled, disfigured, and mobility-impaired. She is an advocate for lipedema awareness, hoping that through early diagnosis and treatment, other women will not have to go through this.
Michelle has Stage 3 lipedema and intermittent lymphedema. She grew up in Texas and now lives in South Carolina with her husband Aaron and three cats. Many members of Michelle’s family have lipedema, so even before she knew a name for the disease, she knew that heavy and painful legs were normal for her and her family. She has seen her mother suffer from complications of advanced lipedema and lymphedema, so she knows that she has to fight every day to keep her mobility and keep her body as healthy as possible. She wants to help educate others so that other women do not suffer like she has seen her mother suffer.
Asmaa has suffered with lipedema since puberty, and like most women, was misdiagnosed as being obese. Despite dieting and exercising, her legs remained the same. She found out that she had lipedema from a Vein Specialist in Houston after she gave birth to her son, who is now fifteen months old. She is a freelance writer for lipladyfab.com, a popular blog for lipedema, and holds a Master’s in Public Health. Her goal is to raise awareness and acceptance of this disease.
Mary lives in Vermont, where it seems that very few know about lipedema. She believes that she has had lipedema for a long time, but her official diagnosis of lipedema, lymphedema, and Dercum’s disease was made in 2011 by Dr. Herbst. In 2005, she ended a career she loved as an art therapist, and she is now on disability. Her circumstances are not good, but her attitude is, and she has not lost hope…really, it is tattooed on her arm!
Kimberly lives in Staunton, Virginia. She is a mother of six children and a grandmother to two boys. She has worn many hats in her life, and she currently teaches a sociology class to a group of high school age students at a community home education co-op. She loves to write and research, learn new things, and meet new people. She is a purpose driven woman and lives by the principle that if you are doing what you can, you are doing what you should. She has Elhers-Danlos and lipedema Stage 2, but it does not have her.
About The Lipedema Project
The Lipedema Project was founded in 2014 by Dr. Mark L. Smith, MD, FACS and Catherine Seo, PhD to begin the research and treatment for lipedema, a chronic fat disorder. Lipedema is a disease involving abnormal fat deposition that can result in pain, immobility, and lymphatic disturbances. Lipedema progresses over time often developing lymphedema, a chronic condition called lipolymphedema.
With obesity reaching epidemic proportions and anti-fat bias prevalent in healthcare, it becomes critical that patients are correctly diagnosed, that resources are invested in understanding this disease and how it can be treated, and that patients have the support, knowledge, and options to manage these chronic conditions.
Currently, The Lipedema Project, Inc. is a 501(c)3 non-profit organization devoted to increasing awareness and providing education, research, and treatment for lipedema through online and face-to-face programs and building community.
The lipedema documentary is available for viewing on Facebook, Lipedema – The Disease They Call FAT.
The book is available on Amazon, Lipedema – The Disease They Call FAT: An Overview for Clinicians.