A rare condition killed my brother – I’ve been diagnosed with the same
A rare condition killed my brother – I’ve been diagnosed with the same
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Travelling home on the Tube after a routine day at the office in 2003, aged 32, the tell-tale tingling in my fingers and buzzing in my face forewarned of an oncoming migraine. Having suffered with complex migraines with aura every couple of months since my early 20s, I was not unduly worried; the pain and visual disturbance usually passed after a couple of hours of sleep.
![[Luan Pope: I was diagnosed with a rare condition that killed my brother]](https://metro.co.uk/wp-content/uploads/2024/12/SEI_233551768-6b3e.jpg?quality=90&strip=all&w=646)
Two days of terrible head pain, inability to sleep and increasing confusion followed, culminating in my brother, Julian, taking me to hospital. While awaiting triage my vision went and I started shaking uncontrollably. I was put in a side ward where I became semi-conscious, incapable of holding a cup or lifting my arms.
![[Luan Pope: I was diagnosed with a rare condition that killed my brother]](https://metro.co.uk/wp-content/uploads/2024/12/SEI_233551766-b6ca.jpg?quality=90&strip=all&w=646)
I vaguely recall a medic suggesting ‘hysterical blindness’ and sensing their frustration at the inconvenience I was causing. My last recollection is watching the ceiling roll past as I was being taken for an MRI scan. Five days later, I woke up to see my mum and other brother, Russel, standing over my hospital bed; they had both travelled 200 miles to get there. I knew something serious must be wrong.
![[Luan Pope: I was diagnosed with a rare condition that killed my brother]](https://metro.co.uk/wp-content/uploads/2024/12/SEI_233551874-f4aa-e1734442056908.jpg?quality=90&strip=all&w=646)
A barrage of tests and scans highlighted extensive white matter lesions on my brain, but no real cause or trigger. The event was put down to a severe hemiplegic migraine (a rare type of migraine that involves temporary weakness on one side of the body) and ‘just one of those things’.
![[Luan and Molly]](https://metro.co.uk/wp-content/uploads/2024/12/20240614_084016-3171-rotated-e1734531853169.jpg?quality=90&strip=all&w=646)
