Sunday, 28 February is International Rare Disease Day, a day to raise awareness among the general public and decision-makers about rare diseases and their impact on people’s lives. The Advocate has spoken to three people with rare diseases, via Rare Voices Australia, and will be profiled over the coming days.
Despite being diagnosed with Still’s disease, a rare auto-inflammatory condition that causes severe muscle and joint pain, Timothy Fulton from Canberra, is on his way to running 100 kilometres, and raising an incredible $2250 for Rare Voices Australia.
The 27 year old is pushing through the pain barrier to raise awareness of not only Still’s disease, but all forms of rare diseases ahead of International Rare Diseases Day on Sunday, 28 February. Still’s affects between one in 100,000 to one in 1,000,000 people globally.
Before his life-changing diagnosis, Tim grew up playing competitive sport and represented Australia in ice hockey at under-18 and under-21 level. He also competed in the National Australian Ice Hockey League for three seasons until the age of 21.
“I continued to play sport and exercise regularly, but in 2015 my health began to slowly decline. I remember vividly driving to training one night and just knowing something was wrong, but being unable to put a finger on why. I continued to push the feelings of fatigue, sore throats, and joint niggles aside for several months excusing them as being a result of low-grade colds,” Tim said.
“In January 2016, my health rapidly declined and I found myself lying on my back in the hospital unable to move and in extreme pain. My joints were swollen and sore, and my throat felt like it was on fire. A rash covered my torso and face and my inflammatory markers were through the roof.
“It took a few weeks, but I was eventually diagnosed with Still’s disease. At this point, my life came to an abrupt stop.
Tim was bed-bound for two to three months after his diagnosis and house-bound for close to eight months until he could get his Still’s under control using a biologic therapy.
In 2017, Tim went into a medication-free remission that lasted close to two years. In 2019, Tim unfortunately relapsed and is continuing to manage his symptoms with medication.
“My life had abruptly changed in the space of two weeks and it felt like my attitude was the only thing I had control over so I was determined to make the most of it,” Tim said.
In August last year, to stay on top of his mental health, combat the effects of calcium leaching from his medication, and his desire to encourage people, particularly those in the rare disease community, Tim set himself the audacious goal of running 100km before Rare Disease Day, 28 February.
Tim has so far run 97 kilometres and raised $2250, and the final 5 kilometres of the 100km challenge, will be run on Saturday, 27 February at the Lake Burley Griffin Park Run in Canberra.
“I’m a big believer of living with an ‘It is possible’ attitude. This doesn’t mean you’re naive to the reality of your circumstances, but it does encourage and motivate you to think about what might make something possible, and that is such an important first step,” Tim said.
“It’s undeniable that Still’s has taken a lot from me physically, emotionally and socially. It has radically changed my life for the time being, but every day I have things to be truly grateful for. Each day starts with putting on the right lens and viewing my situation a little creatively so I don’t miss the opportunities that lie before me.