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Running from rare disease

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In 2016, Tim Fulton was studying graphic design at UC with a flawless grade-point average and representing Australia in ice hockey when his busy and productive life slipped off kilter.

He remembers feeling a bit off, and after a few months, he could no longer excuse his pain and lethargy to low-grade colds.

A trip to the GP provided the first real clue that something was very wrong. Tim’s inflammatory levels were off the chart.

A few days later he was lying in a hospital bed unable to move because of the debilitating pain he was in. His throat was on fire and he would experience spiking fevers and rashes several times a day. A week after admission to hospital he was diagnosed with an ultra-rare inflammatory condition known as Adult-onset Still’s Disease, a condition that affects approximately 1 in 500,000 people globally.

Tim has spent considerable time in hospital battling his rare Still’s Disease

The disease deceives the body into not recognising itself, so the immune system gets confused and starts attacking the very thing it is designed to protect. Ironically, according to Tim, the hyper-inflammatory response is very similar to what occurs in severe COVID patients.

Currently there is no known cause for Still’s and there is no cure.

After months of suffering and failed treatments, Tim was granted approval to start a biological infusion at hospital which slowly improved his health. He eventually went back to university and managed to graduate (top of his year) and then secured employment in the field of his dreams, graphic design.

But a relapse in 2019 showed Tim the true nature of what he was up against. He began the long road to rebuild his health again. He said he felt a glimmer of hope emerging for the rare disease community in Australia when the Federal Government release the National Strategic Action Plan for Rare Diseases—the first initiative of its kind.

“A key pillar of the Action Plan is raising awareness and I thought to myself  ‘I need to get moving and I need to start a conversation around rare diseases’ and Running Rare was officially born as an Instagram account’.”

Running helped Tim regain his strength and find a way to raise awareness of others who were suffering from rare diseases

In line with his ethos to raise money and awareness, Tim now runs and encourages others to do so for the worthy cause of rare diseases. He shares their stories on his website Running Rare.

“Running Rare is not about the distance, or speed or a one off demonstration of athletic performance. It is about ordinary people deciding to continually show up and giving what they can.”

“I set myself the goal of running 100km in the 200 days leading up to Rare Disease Day 2021. At the beginning I could barely run 500m and the exhaustion I would feel for days afterwards really made me question whether I should continue. But I kept reminding myself that I didn’t have to be the athlete I once was, I just needed to keep showing up.”

Tim is a former Under-20 World Champion Ice Hockey player

In the fortnight before Rare Disease Day 2021, Tim was able to raise over $2,500 for Rare Voices Australia, but his primary goal is to give the rare disease community an opportunity to share their stories in an authentic way.

“To achieve this, I spend a lot of my free time either running, thinking or working on Running Rare. It is something I am really invested in because I know it is such a critical time to create conversation around rare diseases during the Action Plan’s implementation.”

“It wasn’t that long ago that I could barely get through a day at work, and then slowly I built back up to a four-day work week—but I’d spend most of my time outside of work in bed recovering. I love my job, but my passion is Running Rare and I am excited about what the future holds.”

This year, he’s introduced a community goal of 1,000km before Rare Disease Day.

“My hope is that people will get behind the idea of getting moving for rare diseases as a method of starting authentic discussions about rare diseases.

“It is really simple to get involved, either visit the website and send me a message or use the #runningrare on Instagram with a photo, your distance and the time you spent moving and whether you’re moving for a particular person or condition.”

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