Cole, 29

My symptoms began in 2021, but I wasn't officially diagnosed until 2023. I'd always known I had a rare condition paramyotonia (muscle stiffness) that ran in my family but I never expected my path to look so different from theirs.

I worked as an outdoor instructor before training as a paramedic. Then one morning at 24, I woke up unable to get out of bed without pushing myself up with my arms. It kept happening I began falling over, having no strength in my legs with no explanation. Hospital visits followed, an MRI came back clear, and despite my family history, I was misdiagnosed.

I kept falling at work, terrified I couldn't manage manual handling safely. A private consultant dismissed me too, though for the first time I heard the words "periodic paralysis." I researched obsessively and pushed for proof. Months later, a specialist finally examined me properly, ran the EMG and genetic testing, confirming a rare neuromuscular condition called periodic paralysis. Further to this, a hospital admission with a potassium level of 3.2 confirmed hypokalemic periodic paralysis.

Hypokalemic periodic paralysis is a rare genetic condition that affects how muscles work. It's caused by a fault in tiny channels in muscle cells that control the flow of potassium. When potassium levels in the blood dip, even slightly, these faulty channels stop working correctly and the muscles simply can't respond, leading to sudden episodes of weakness or full paralysis. Over time, repeated attacks can cause lasting muscle damage, so what starts as temporary weakness can eventually become permanent.

Treatment has been a constant search for something that holds. Some partially worked for a while but have since developed into multiple long hospital stays and is now refractory to treatment. The decline in my muscles means I now rely on a wheelchair every day, as the smallest amount of walking triggers a full paralysis episode, and I am not getting any recovery period to regain normal mobility.

This condition took the career I loved; I'll never return to frontline paramedic work, and it's taken spontaneity and certainty in my own body. It's forced me to grieve a life I once had, and I've had to watch my body turn against me, losing my independence to do the simplest of things.