Rare Diseases

Model raising awareness of rare condition that caused leg to double in size

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A former model in Australia is gaining a following on Instagram as she shares photos of her swollen leg to raise awareness of a condition she’s been coping with since her first pregnancy. Sarah Buller, whose left leg is about twice the size of her right, suffers from primary lymphedema.

Under the handle @lymphosaurus_rex, Buller has been sharing photos of her swollen leg wrapped in bandages as she tries various treatments to reduce her symptoms. She also has a blog where she chronicles her journey, which began in April 2013.

“I noticed some slight swelling in my left groin area and put it down to ‘normal pregnancy swelling,’” Buller wrote on her blog. “However, within a few weeks my whole leg had blown up and I knew something wasn’t right.”

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A photo posted by @lymphosaurus_rex on

Her symptoms did not go away after she gave birth, and a few months later she received the diagnosis. Lymphedema occurs when the lymph vessels are unable to adequately drain lymph fluid, typically from an arm or leg, according to the Mayo Clinic. Primary lymphedema is a rare, inherited condition that can be seen during infancy, around pregnancy or puberty, or after age 35. Complications can include infections or a rare soft tissue cancer if left untreated.

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“To be honest I really didn’t understand what Lymphedema was and was pretty inconsistent with wearing my compression stockings because I genuinely believed that it would just go away one day. After my second pregnancy in 2015, I realized that this was not to be the case and began to think more serious about the condition,” Buller wrote on her blog.

In May, she traveled to France, where she underwent a lymph node transfer. Doctors said she wouldn’t see results for six months, but she has already noticed a difference.

“I definitely notice a difference in size – it’s not heaps smaller but there has been a small reduction already in my upper leg and around my knee is a bit smaller too,” she wrote on her blog. “My calf fluctuates a lot, some days it can be good, other days its tight and big as anything.”