Guest guest Posted November 30, 2002 Report Share Posted November 30, 2002 hi there, it's such a great relief to find that I'm not the only one who has been diagnosed with this illness. I live in New Zealand and a doctor who treated me at the hospital told me that there are no more than 5 people in this country with this disease. I've been feeling so lost and don't know how I can get more information about this disease. There isn't any book available in here so my only source is the internet. I've had this since 1997 and thank God I only get sick 2 weeks in a year. I was hospitalised once a year since 1997. I'm glad I could join this group and hope to share more about this rare disease. Thank you. Regards, Quote Link to comment Share on other sites More sharing options...
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