“I didn’t receive any information about MS when I was diagnosed. Nothing.” – Leonie’s story
Yesterday we reported on our survey which found that only 12 per cent of people with MS felt they got all the information they needed when they were diagnosed. The impact of this information gap can be profound. Many people who took part in our survey told us that they felt they had to do their own research on the internet. What they found was often overwhelming, sometimes misleading and certainly not tailored for them.
Amelia Southard is a writer and blogger who lives in Devon. She was diagnosed with MS in 2002. Earlier this year she took part in the MS Trust Continence Question Time, a series of short videos looking at some common MS bowel and bladder problems.
With a glittering career as a chef, restaurant owner and lecturer, Jonathan Reen was in the prime of his life. Then, at the age of 46, he was diagnosed with primary progressive MS. For six months, as his symptoms got worse, he had to give up the work he loved. But now, after a period of readjustment, he’s set up Urban Chefs, a new business offering cooking lessons to people in their own homes. Here he explains how his lifelong passion for food has kept him going through the ups and downs.
After disclosing my MS in a pretty unabashed fashion in a national broadsheet (The Independent) last November I thought I was done with ‘coming out’ about my disease. Then this summer a BBC researcher got in touch about a series for Radio 4 and wondered whether I’d be interested in telling my story for their series.