I have a friend with Superficial Siderosis, we’ve been mates for over 25 years. When he was a kid and years before I knew him, he had a brain haemorrhage which lead to surgery and complications. Through sheer determination and bloody-mindedness, he grew up to lead a fully independent life and became a talented fitness instructor.

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I won’t call him a survivor because he’s never considered himself a victim.

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A few years ago, his already poor hearing got worse. His balance went and more than once he nearly fell into the spa swimming pool at work. Headaches, tiredness and confusion set in. Then one morning, after he’d not long seen his neurologist, he showed me a letter that had just come through the door. I remember reading the diagnosis: Superficial Sidersosis. I’d never heard of it before but it didn’t sound that harmful, right?

So, I went online. With a background in research, I struggled to glean the information I needed from fragments of medical papers published by scattered doctors as well as blog posts by a few, earnest writers. Here a little, there a little – as I pieced things together I started to see the whole picture. This monster was going to take away my friend’s life.

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Then I stumbled across a small research programme in the USA – a doctor was trialling pioneering use of a drug. I persuaded my friend’s neurologist to prescribe it. Then came the fight for funding. Testing my skills to the limit, I sat at my dining room table and put together a report on up-to-date research and the who/where/how of the other few patients being treated in the UK – and took it to our local MP. We got the funding but his neurologist, whilst always supportive, was sceptical. In a long career, my friend was the third person he’d seen with the condition and I could tell his reasons for not giving us false hope were compassionate as much as professional.

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But through mind-fog my friend came back fighting. Over lattes in a town-centre coffee shop, one weekday morning, The Silent Bleed was born. It would make sure that those suffering the distressing, draining, confusing diagnosis letter would have somewhere to turn for easily accessible information; so they wouldn’t be alone; so they’d have access to an expert. It would be a hub for fundraising for research, discussion, support.

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It felt a bit like facing down a t-rex with a kitchen knife – but I figured many knives together might do the trick.

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We set up a website, established links with Dr Levy at Johns Hopkins in Baltimore and then started chatting to Dr Werring at the Queen’s Square stroke centre in London. We waded through reams of paperwork to become a UK registered charity and started organising fundraising events. All the while, my friend’s health deteriorated but his determination didn’t.

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The future is still uncertain and I live with this every day but at least the charity gives me a way to fight back when things seem hopeless. I’m regularly overwhelmed by the generosity of others: the benefit in lieu of flowers we get when someone has sadly passed away; businesses who give their time and services for free; volunteers who get together in a back room of the pub to make lists and stick tombola labels on bottles.

 

Then there’s the online conversations we have with people – someone who’s introduced their mother’s neurologist to Superficial Siderosis because of something they’ve read on our site and got the diagnosis and treatment they need. The leaflets we send across the world to raise awareness with medical staff. The hits on the website, searching for symptoms and tips to cope with everyday life.

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I think back to the thunderclap that was the diagnosis letter. How that spring, I barely noticed the flowers, the birds, the days getting longer. I was under the cloud of this debilitating, degenerative, cruel condition, all the while, my friend was sitting in the sun. He knew.

 

He knew we were at the start of something way bigger than two buddies sharing cake in a coffee shop.