By Kathryn Willis
An interview with Kathryn Willis and the condition she shares with George Clooney!
1. When did you first get symptoms?
I first for my symptoms on holiday in Mauritius in 2013. I had been for a long breach walk with my dad in 90% humidity. That evening, while plating up my dinner at the buffet, I felt a massive draining feeling, and my head began hurting like never in my life. I skipped dinner and went to lie down. Lying down completely eased my symptoms.
2. How did your symptoms change over time?
Untreated, they completely worsened. Until the first time I had any treatment (3 months later), I had to lie flat 24/7, without even a pillow. My dad nicknamed me snake for my newfound ability to eat completely horizontal.
3. How did the medics respond to your symptoms?
I was flown home from Mauritius and taken by ambulance from the plane to the hospital. The medics decided:
1) I was dehydrated
2) I had taken too many paracetamol
3) there was nothing seriously wrong.
They attempted 6 spinal taps which were all dry. Surgeons operated to perform a spinal tap, which was entirely blood. I was discharged the next day, being told I had a small bleed but would be fine. In fact, my spinal column had burst and my brain was sinking through my skull. The blood was due to blood vessels banging against my skull, unprotected by CSF.
4. Have you ever been admitted to the hospital for your condition/symptoms?
Over the last 11 years, I have been admitted 27 times, spending over 18 months collectively in hospital.
5. Did you meet any stand-out medics along the way?
My first neurologist, who really cared but this wasn't his speciality. A radiographer who spent months doing test to work out where my spine had burst.
6. Did you have any negative interactions with medics along the way?
Absolutely. Consistently, A&E doctors assume I have a migraine and don't know why I'm bothering them.
7. What was the test that finally diagnosed you?
None for diagnosis - my consultant neurologist diagnosed me on first sight. However, finding where my spine burst took years.
8. What would your tips be for anyone else who thinks they could have a similar diagnosis to you?
Trust your gut. Have family advocates. When doctors tried to discharge, my family refused. They wouldn't let me go home until they had answers.
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