When a rheumatologist first suggested undergoing a stem cell transplant to Balgownie's Claudia Sultan she said 'no', she wasn't ready to die.
Google had become her best friend and she had spent endless hours researching her rare disease, scleroderma, she knew the risks and the mortality rate associated with the treatment.
"I was a healthy young woman, I was working myself up in the corporate world, I had just purchased my first home," the now 37-year-old recalled. "I was trying to outlive the disease and maintain independence and not lose that, however it was much stronger than I was."
Scleroderma is a life-threatening chronic, autoimmune disease which affects the connective tissue and is mainly characterized by the thickening and hardening of the skin - turning an able body into the "Tinman from the Wizard of Oz".
I was trying to outlive the disease and maintain independence and not lose that, however it was much stronger than I was.Claudia Sultan
Ms Sultan said only around 6000 Australians live with the disease, describing it as "a lifelong affliction of pain and ongoing treatment".
It was nearly a decade ago when the first symptoms began to appear as Raynaud's phenomenon, where her fingers and hands would turn blue and seize up with throbbing pain due to a change of temperature.
As time went on Ms Sultan began noticing changes to her skin while the pain crept through her joints making them sore and tight.
"It got to a point I started wrapping bandages around my wrists and ankles because they were so sore," she said.
Once the diagnosis of scleroderma was made, she said the illness didn't waste any time and became quite aggressive, smothering her body with inflammation.
Ms Sultan's health began deteriorating where everyday tasks were a challenge, like trying to sit at a computer and type or even walk, until one day the pain was so severe getting out of bed or holding a mug of tea was impossible.
"I couldn't control my knees and I was falling down the steps getting to the train," she said. "I then lost full control of my body, I couldn't do anything - like tying my shoelaces or having a shower, I had to rely on my mum."
Several opinions were sought from different rheumatologists in a bid to win this David and Goliath battle.
When a stem cell transplant was suggested as it could reverse the condition by 50 per cent, Ms Sultan thought it was the worst news she could possibly hear.
But she wasn't the one to break down in the doctor's office, it was her mother by her side - tears streaming down her face after hearing the only thing that could make her daughter well could potentially kill her.
"Perhaps I was scared of dying," Ms Sultan said. "[I thought] 'what if it fails, what if it didn't work, what if it took my life' ... there was more I wanted in life. I wanted to get married, I wanted to start a family, I wanted to watch my niece and nephews grow."
Eventually Ms Sultan changed her mind after realising how much her illness was impacting her family, "my pain was their pain," she said.
Her room at St Vincent's Hospital had a "nice view" of Centrepoint Tower but that didn't make the process less daunting or less physically and emotionally exhausting.
The arduous treatment would take weeks and begin with chemotherapy; she would lose her hair, part of her identity.
She would be hooked up to a machine for nine hours with her blood going in and out so to extract her blood-forming stem cells for "regeneration".
There would be more chemotherapy and hospital isolation, before her "cleaned" stem cells were infused back into her system in the hope of breathing new life into her body.
"It was tough, there were days I had a heart rate of 170, I had a fever up to 44 degrees, there were late night visits to the operating room because I had a blood clot," Ms Sultan said.
For a long period there was also a feeling of "self hate and self pity", questioning why she had been chosen to be burdened with such a disease but learned to shift her mindset.
For the first three months after treatment she could not leave the house due to her low immunity and had to follow a strict diet, though nausea and constant vomiting made it hard to put on any weight and enjoy food for months to come.
When first discharged, Ms Sultan was on 20 different medications but has finally made it down to one.
"About a year later I actually felt good about myself on all levels," she said. "By then I had kind of regained my independence and I was in control of my mobility and I was able to do the things I used to do before [I got sick]."
This October will be six years since that life-changing treatment which she paints a vivid picture of in her new book, A Life With Uncertainty.
"It took me along time to appreciate it's okay to not be okay and my life is the way it is," she said. "When I started writing the book I didn't anticipate I would finish it, it was just an activity for fun ... but I really enjoyed it."
Ms Sultan still has some ongoing health issues like being diagnosed with lung disease from fibrosis of the lungs, but she is happy and blessed that her scleroderma is "in remission".
There would be highs and lows in the book, the author said, but by sharing her story with the world she wanted people to realise they should "live their best life and not give up".
"I'm just grateful I've been given a second chance at life, people need to see that life is a gift."
A Life With Uncertainty, Shawline Publishing, is out now.
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