I was an undiagnosed child once. I know what it feels like to spend years getting really ill but no one really knowing what was wrong. On average in the UK it takes 4-7 years to diagnose a rare disease – for many rare disease patients it is much longer.
I went through the ups and downs (mainly downs) of the diagnostic odyssey – referral to referral, specialist to specialist. I knew the frustration at not receiving a proper answer and knew the pain of not receiving proper treatment.