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Lipedema: “Maybe” a gift in disguise

There is a Zen story about a farmer whose horse ran away. Upon hearing the news his neighbors visited sympathetically, saying, “Such misfortune.” “Maybe,” replied the farmer. Early next morning, the horse returned bringing with it three wild horses. “Such good fortune!” the neighbors exclaimed. “Maybe,” replied the farmer. The next day, his son was thrown while trying to ride one of the wild horses, and broke his leg. The neighbors again offer sympathy: “Such misfortune.” Replied the farmer, “Maybe.” The day after, military officials came to draft young men into the army. Seeing that the son’s leg was broken, they passed him by. The neighbors congratulated the farmer for how well things had turned out. And so it continued.

In 2012, I discovered I have an under-recognized and generally misdiagnosed fat disorder called lipedema. My overwhelming experience was one of relief, tempered with shock. Since puberty I had struggled with my weight. I found a self-help group in my mid 30s and finally lost 140 pounds, and I maintained that weight until peri-menopause descended on me in my late 50s. Though there are many symptoms ranging from night sweats to hot flashes, the underlying physiology of the process is significant hormonal disturbance.

I slowly started to regain weight, despite my continued rigorous adherence to my food plan and exercise. I developed unidentifiable and significant edema. A serious cyst condition grew that resulted in impaired mobility. Surgical intervention was recommended and five surgeries were performed from 2009 to 2011. Despite my best efforts to manage this process, I was left with surgically induced lymphedema, a life-long disorder of the lymphatic system that very few doctors know about or treat. After much research, I found and received specialized treatment. While there was some reduction in the swelling, significant problems continued. I was in excruciating pain, not common to lymphedema. I was told that I would end up in a wheelchair. Something else was seriously wrong. But what?

I hunted with fervor for answers. My lymphedema therapist gave me a textbook to read, Földi's Textbook of Lymphology for Physicians and Lymphedema Therapists, and there, in Chapter 9 was the answer I had been looking for during my entire lifetime: LIPEDEMA. The authors cite that 11 percent of women have this fat disorder, which would mean 17 million women in the U.S. and as many as 350 million worldwide.

I created a website, at the time for my health-care providers, to organize the research. Women from around the world began to contact me. Lipedema was more widespread than I could ever have imagined. Support groups emerged online. Life-changing support, camaraderie, referrals, friendships, and even more and more answers revealed themselves.

I identified resources across Europe and began to travel with video camera in hand, gathering insights. I interviewed patients, doctors, surgeons, researchers, and scientists, and produced a documentary in order to raise awareness, “Lipedema: The Disease They Call FAT.”

I now see so many gifts in disguise, and I dedicate what I’ve learned to help other women to help themselves. My life would have been very different had I known as a young girl what I know now. Diagnosed and treated early enough, one can stop the progression of lipedema. At 67 years old, it’s not as easy. I’d rather not have lipedema. But then I think about the words of the wise farmer: “Maybe.”

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories.

Catherine Seo, PhD, is co-director, with Mark L. Smith, MD, FACS, Director of the Friedman Center for Lymphedema Research and Treatment and Chief of Plastic Surgery at Mount Sinai Beth Israel in New York City, of the Lipedema Project, a comprehensive transmedia program working to increase awareness and provide education, research and treatment for lipedema. Seo, a professor, is currently working on lipedema research as a Research Associate at the Földiklinik, in Hinterzarten Germany.

Photo of Catherine Seo as a child courtesy of Seo

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