By Philippa Roxby
Health reporter, BBC News:
"I am on every drug you can imagine," says Rhya Homewood, listing the 33 different pills she takes every day to cope with her pain.
"I used to go riding, loved hiking with my sons and I used to be a dance instructor but I can't do any of that now."
Rhya has HNPP (Hereditary Neuropathy with liability to Pressure Palsies), an extremely rare disease in which nerves are slowly and progressively destroyed by the body's immune system.
"I tell people I have MS because it's very similar and people understand that."
HNPP is a degenerative and incurable condition, like MS, which is thought to affect just two to five people in every 100,000.
There are 3.5m people in the UK living with a rare condition, the equivalent of one person in 17.
A recent survey carried out by the charity Rare Disease UK found that nearly 50% of people living with a rare disease are initially misdiagnosed - and some people face years of unnecessary delays before a diagnosis is made. Read more>>