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Two patient advocates are working to raise awareness of lipodystrophy, a rare and often misdiagnosed disease that affects the body’s ability to store and regulate fat, leading to serious metabolic complications.
Andra Stratton, president and co-founder of the U.S.-based nonprofit Lipodystrophy United, and Sharon Halperin, founder of Lipodystrophy United Israel, said in an interview with Ynetnews that patients around the world often face years of unexplained health problems before receiving an accurate diagnosis.
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Interview with Andra Stratton and Sharon Halperin
“Lipodystrophy is known for abnormal fat distribution, but it’s really about fat dysregulation,” Stratton said. “It causes significant metabolic dysfunction, which leads to serious health challenges.”
The disease can be either genetic or acquired. Some genetic forms are autosomal dominant, meaning a parent carrying the gene has a 50% chance of passing it on. Others are recessive, requiring both parents to carry the gene. Inherited forms of the disease are often progressive, worsening over time.
In acquired cases, lipodystrophy may be triggered by a virus or trauma, prompting the immune system to attack fat cells. “It acts very much like other autoimmune diseases,” Stratton said.
Stratton was diagnosed at age 37 after decades of unexplained health complications. Halperin, too, experienced symptoms from childhood but was misdiagnosed with conditions including Cushing’s disease, polycystic ovary syndrome and diabetes before learning she had lipodystrophy.
“This path is very common, especially for women,” Stratton said. “Men might not be misdiagnosed with those conditions, but they can go undiagnosed until they experience issues like high triglycerides, cholesterol problems or unexpected strokes and heart attacks.”
After her diagnosis, Stratton turned to social media to connect with others, a common strategy among patients with rare diseases. “I met people who were really sick and discovered that, while some research existed, it wasn’t reaching patients,” she said. “That felt deeply unjust.”
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Stratton founded Lipodystrophy United to raise awareness, provide education and support research. Halperin, a cancer researcher who found no information in Hebrew about the disease at the time of her diagnosis, decided to create a similar initiative in Israel.
“When I searched for information in Israel, I found nothing — not in Hebrew and not in English,” Halperin said. “I eventually found Lipodystrophy United online and connected with Andra. That community became my family. I knew we needed one here in Israel as well.”
Both women say their goal is to ensure patients are diagnosed earlier, receive better care and have access to information and support.