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Overcoming Adversity: Man with Rare Brain Disease Takes on Second Marathon for Charity
Overcoming Adversity: Man with Rare Brain Disease Takes on Second Marathon for Charity

Sun, Apr 14



Overcoming Adversity: Man with Rare Brain Disease Takes on Second Marathon for Charity

“I thought that if I sleep, I wouldn't wake up.”: man with rare and incurable brain disease takes on second marathon to raise money for research

Time & Location

Apr 14, 2024, 9:00 AM – 1:00 PM

Stretford, Old Trafford, Stretford, Manchester, UK

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About the event

In 2018, Steve Ricketts had his sights set on surpassing his marathon time of 4 hours, 31 minutes at the adidas Manchester Marathon. However, fate took a drastic turn when he was diagnosed with Superficial Siderosis, an exceedingly rare brain disease, halting his running aspirations. Steve's journey with Superficial Siderosis began with a sudden, agonizing headache in December 2021. Rushed to the hospital, he was confronted with a subarachnoid haemorrhage, a life-threatening condition. The ordeal left him fearing for his life, with the hospital's COVID-19 restrictions adding to the isolation. Reflecting on the experience, Steve shares, "I thought that if I went to sleep, I wouldn't wake up. Hospitals were still under COVID-19 restrictions, so I couldn't have any visitors. It was surreal." After a gruelling seven-day hospital stay, Steve embarked on the arduous path to recovery. Physical rehabilitation was paired with mental resilience, as he navigated the aftermath of the bleed. “The physical recovery was hard, but the mental recovery was even more challenging," Steve recalls. "I resorted to setting physical goals to keep me focused." Despite reassurances that his headaches would subside over time, Steve's persistence led him to seek a second opinion, revealing the rare diagnosis of Superficial Siderosis. Superficial Siderosis, affecting only a handful of individuals globally, presents a daunting challenge with no known cure. Steve's treatment involves a treatment with Deferiprone, medication aimed at slowing the disease's progression, though results are uncertain. Undeterred by the disease's impact on his training regimen, Steve is determined to tackle the adidas Manchester Marathon once more, this time in support of The Silent Bleed Charity. . "Adapting my training has been tough. I can't run two days in a row and need frequent rest," he admits. Though fatigue and other symptoms necessitate a modified approach to training, Steve remains steadfast in his commitment to raising awareness and funds for Superficial Siderosis research. Finding solace in the support of over 125,000 expected spectators and fellow participants at the upcoming marathon. "I ran the marathon in 2018 and loved it. Now, I want to prove something to myself," Steve shares. "Whether I beat my previous time or not, raising awareness and funds for Superficial Siderosis research is my main goal." Join Steve's cause by donating to his fundraising efforts and following his journey on Instagram. Together, let's support research and awareness initiatives for Superficial Siderosis.

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