Luci’s Story

Luci was 28 when diagnosed with aplastic anaemia in May 2014. Here is her story:

I discovered Aplastic Anaemia in May 2014 (aged 28). I had been living in Wales for nine months, having relocated from Australia to be closer to my partner’s family in Cardiff. After a great long weekend with friends, exhaustion hit in a way I’d never experienced, and all of a sudden getting from the kitchen to the couch seemed like a chore.

I went to the GP on my way to work the following morning, struggling to walk just a few blocks yet expecting to be told I was just a bit anaemic. I was however quickly sent to the ER and admitted to the haematology ward with blood counts all in single digits. Terrified and far from home, I dreaded the call to my family on the other side of the world. It took three weeks for a diagnosis, and by then we knew my sister in NYC wasn’t a donor match, so ATG was decided as the best treatment for SAA. It was then my partner and I made the decision to fly home to Australia, literally packing up our lives for the 2nd time in less than a year.

With the now benefit of hindsight, the illness had struck gradually. I had mentioned to a doctor a few months earlier the increased bruises and red dots I was experiencing on my skin, but told it was normal for a female my age. In addition, nose bleeds were becoming more normal and it seemed my gums were constantly aching- all signs that something was wrong, though I never thought to put these together.

I started ATG drug therapy in July 2014 at St Vincent’s Hospital, with a team of wonderful doctors and nurses and meeting many inspiring patients. It’s been a long journey since. The biggest battle was becoming a diabetic from the steroids, and the emotional rollercoaster of the drugs and the many many side effects. My family, friends and partner have been nothing short of amazing. Now in September 2015, the ATG seems to have been effective, but I’m still on immunosuppressant therapy and steroids, so not out of the woods yet. My boyfriend and I recently walked Sydney’s City 2 Surf, the world’s biggest fundraiser and raised over AU $2000, and it really was a huge achievement crossing the 14Km finish line.

 

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During treatment

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Luci with partner James