Posted in Personal Perspective on 11th Mar 2015
I was one of the first in the world to be diagnosed with gluten ataxia nearly 20 years ago at the Royal Hallamshire Hospital Sheffield by Prof Marios Hadjivassiliou. I made history then by making a complete recovery on a strict gluten-free diet. Following a recent double strike autoimmune reaction, I have become poorly again and have ataxia in conjunction with a newly named form being called progressive cortical hyperexcitability with ataxia and refractory coeliac disease.1
As part of a patient led joint project with the Hospital and Sheffield University through the Storying Sheffield project, I have been exploring how creative writing has become part of my rehabilitative tool kit in helping me deal with my condition and to use writing as a therapeutic vehicle and a voice for others with ataxia.