The Rare Condition That Left This Woman With a Permanently Swollen Leg After Her Pregnancy

Sarah Buller is spreading the word about primary lymphedema one inspiring Instagram post at a time.

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When Sarah Buller was pregnant with her first child, she expected the typical pregnancy symptoms. What she didn't see coming? Her left leg swelling to twice its size... and staying that way.

The Australian mother and former model first started experiencing a little swelling in her left groin area three months into her first pregnancy, but thought everything was normal. But over just a few weeks, her entire left leg inflated like a balloon.

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"I knew something wasn't right," she writes on her blog, The Lymphosaurusrex. "After a few visits to the ER, blood tests, doctors' assessments, and ultrasound scans, the doctors were still unsure what was causing my swelling and basically told me it was just a weird thing that would go away after I gave birth. Unfortunately, it did not."

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A few months after the delivery of her little girl, Buller found out she has primary lymphedema, a rare, inherited condition that causes swelling in the arms or legs due to a blockage in the lymphatic system.

There isn't currently a cure for lymphedema, so managing the condition has become an around-the-clock battle, Buller says.

#lymphedema #lymphaticsystem #lymphnodes #lymphaticdrainage #lymphie #lymphnodetransfer #vlnt

A photo posted by @lymphosaurus_rex on

"Wearing compression garments every day, manual lymphatic draining massages at the physiotherapist, exercising, elevating my leg, bandaging, taking supplements to get rid of excess fluid... It has always been a constant daily struggle to keep the swelling under control," she writes.

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When her lymphedema got worse last August, she felt incredibly alone and depressed and decided to try to find other women who were going through the same exhausting ordeal. With a quick hashtag search on Instagram, she came across ladies just like her who were also searching for answers. One of the friends she made even introduced her to a procedure that could help alleviate the severity of her condition.

Buller ended up traveling to France last May to undergo a Vascularized Lymph Node Transfer (VLNT), a microsurgical procedure that takes normal lymph nodes from one part of the body and transfers them to the area of the body that suffers from lymphedema, according to the National Institute of Lymphology.

Buller's swelling still fluctuates — she says taking care of her post-op requirements is a full-time job — but she's confident that she's on the road to a more bandage-free life. Follow her inspiring journey on her blog and Instagram.

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