Name: Kathleen Cains
E-mail : kathleen.cains@ntlworld.com
Adult: 44 years old (diagnosed in my 30s)
Location: Nottingham, England
Areas of body affected: middle finger, left hand
Personal History:
I was doing my degree at University when my finger became very painful. I was at the doctor's for something else and casually mentioned the increasing pain in my finger. I expected her to say it was nothing and that I was doing too much writing but she didn't know what the problem was and sent me to the hospital. The surgeon sent me for lots of tests and disagreed with the radiographer, who thought it more sinister. He was doing an article for the Lancet on Melorheostosis and knew that was what it was. He sent me off with a cheery goodbye and told me I had nothing to worry about. I asked him to write down the name of the condition but he said it was too long and not to concern myself. I have had to ask my nurse to write it down from my medical notes so that I could look it up on the internet. I suppose I am lucky it is not too painful just annoying sometimes. I do worry, though. I like to keep informed so I was not too happy at being swept aside. I don't know if it can spread or if it is anywhere else in my body. Will it affect me later in life? I would like to know more.