Swelling in pregnancy is not unnormal right? Sometimes. But, not always.

A photo posted by @lymphosaurus_rex on

When former model Sarah Buller was pregnant with her first child, she watched as her leg began to swell. On her blog The Lymphosaurus Rex, Buller writes, “I noticed some slight swelling in my left groin area and put it down to “normal pregnancy swelling.” It wasn’t.

With weeks the mum-to-be’s left leg was completely swollen. It became painfully obvious that something just wasn’t right. We all know that pregnancy is a time of seemingly constant doctor’s appointments. Add in a suddenly swollen leg, and you have (or rather, Buller had) ER visits, doctor’s appointments, ultrasounds, blood tests and more. After all the poking and prodding, the doctor’s really didn’t have much to say. That’s right – no diagnosis.

sarah buller lymphadema
Sarah Buller’s leg progressively got larger due to her lymphadema

That is, until Buller’s pregnancy was over. The doctors thought that her severe swelling would go down after giving birth. It didn’t. A few months later, the new mum was diagnosed with primary lymphedema. This means that there’s an accumulation of fluid (in excessive amounts) in at least one area of the body, according to the Australian Lymphology Association. Primary lymphedema is a congenital condition that has one of a few different reasons – a reduced number of lymphatic vessels, lymphatic vessels that are too large or missing part of the lymphatic system. In any case, it’s not something that you can ‘catch’ or ‘cause’. You’re born with it.

So, if you’re wondering why this condition waited until Buller’s pregnancy to show up – there’s no easy answer. In some cases it’s present at birth. But, in others it doesn’t start until well into adulthood. Whatever the reason, it’s not a pregnancy complication.

Even though the doctors knew what she had, they didn’t have an actual answer for her when it came to how to help. Buller spent hours on the Internet, trying to find a solution. Each time she went to see a doctor she got, as she describes it a, “nothing can be done except manage it as best you can” speech.

While there’s no ‘cure’, doctors did recommend a few ways to manage the lymphedema. This meant wearing compression garments daily (yes, we know, stylish-right?), manual drainage (by a physiotherapist), bandaging, taking dietary supplements and elevating her leg.

By August of 2015 the mum was in a state of depression. Isolated and alone in her struggle, she writes that she felt like, “the only person in the world who suffered from this condition.” Of course, she isn’t. But, that didn’t help her to feel any more hopeful.

This is when she turned to social media. The mum searched Instagram for the hashtag #lymphedema. What did she find? A community of people like herself. Not only did these people also suffer the serious swelling, but they were also suffering from isolation and depression – all at the hands of this not-so-will-known condition.

On her blog, Buller writes, “They were asking the same questions as me, searching for the same answers, sharing information, supporting each other.”

Buller used Instagram not only to help herself, but to help others. By posting pictures of herself, this mum was able to get the word out there and show the world what it means to have the pain and swelling of lymphedema. That said, some of the mum’s pictures and posts have been taken out of context – make it seem like she’s more of a sideshow attraction than a human being. On her blog, Buller writes, “We are not circus freaks and Lymphedema is not a joke.”

The mum points out that there are now three surgical procedures that can treat the issue. Even though the procedures can’t yet cure the condition, they can help the symptoms. Buller had a microsurgery to reconnect the artery and vein to new blood vessels in her leg, providing support to the lymph nodes (that weren’t functioning).

Lymphedema still affects Buller, and it will continue to do so – until hopefully someday there is a cure.

If you’re not sure what having this condition means or you just want to support this mum (and the men and women like her), check out her Instagram page and search the hashtag #lymphedema.

Author

Belinda's a passionate advocate for community and connection. As the founder of the Mum Central Network she’s committed to celebrating the journey that is Australian parenthood. Mum to two cheeky boys, and wife to her superstar husband, they live a busy but crazy lifestyle in Adelaide. Great conversation, close friends and good chocolate are her chosen weapons for daily survival. Oh, and bubbles. Champagne is key.

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