Stories

Cailin’s Rare USP7 Story

November 19, 2024

A woman in her twenties wearing an aqua green shirtHey there! I’m Cailin, twenty-seven years young and rocking the rare Hao Fountain Syndrome, usually a kiddo’s club. I do life my own quirky way, and it turns out, a lot of my past struggles have been tied to this little-known gem of a condition.

On June 28, 2022, I had to share the bummer news on Facebook: I couldn’t jet off to Germany for a conference on my syndrome because, surprise! I was in splints after a fall that left me with a torn ligament and a chipped bone. Seriously, who knew a tumble could lead to such drama? Fingers crossed I can make the next event!

I’ve also been through the wringer with toe straightening, steroid shots, and a whole lot of sore feet thanks to my flat arches. But hey, I refuse to let any of it get me down! Oh, and did I mention the saga of my T-Tubes? One of them decided to play hide-and-seek in my ear, so surgery had to step in. Plus, I recently had an ECG to check out my sleep twitching—turns out, I might have a new sleep buddy called sleep apnea or maybe epilepsy. Stay tuned!

All these fun facts point back to my recent diagnosis, which also comes with a flair for frequent UTIs and some kidney mischief. Yep, I’m self-catheterizing now—just another day in the life! I know I’m spilling a lot of my medical tea, but I’m hopeful that researchers are cooking up a cure for us rare folks.

To my fellow Hao Fountain warriors, you’re not alone! I’m one of a couple in a million in the UK, and the oldest to be diagnosed with the USP7 gene. If you’re on this rare journey too, hit me up on Instagram @Cailinmeara! And don’t forget to follow my family pup Poppy at @Penny.thegreyhound. I can’t wait to connect with all you amazing rare warriors out there! 💖✨

follow me on @CailinsBraceletsprojectforHFS

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