Quote:
Originally Posted by Koala77
I know this is not a neurological illness but a dear sweet niece of mine has been told that she probably has this condition.
The specialist she saw said that Sapho Syndrome is very rare, but he couldn't give her much information about it at all.
She's having a bone scan next week which will hopefully confirm or not what's going on with her joints.
I was just wondering if anyone has heard of it, and if they have any information at all. She's done the usual web search and found a little about the condition, but she would also like to hear about personal experiences, if any.
Thank you... just in case.
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Hi, my daugter has had this condition since she was 10 years old. She is sixteen now. She has it in her collar bone knees wrist and ankles. Sometimes it did not show up on the first scan but on the next one but she knows when it has gone to other parts of her body. She has had many drugs antiinflamtry, pamidronate, steroids. all worked for a short time but she was off school for 2 years. she is now on a drug called Inflixmab it is very expensive. But she has had nearly a year with hardly any symptons. Hope this helps.we live in the UK and is well known at her Hospital.