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This is a wonderful opportunity to connect online with parents/friends and family who are dealing with FMF. Hopefully we can meet each other and lend our support...what treatments have worked, what hasn't. Symptoms and what has helped certain symptoms. Doctors who specialize in treating FMF. Good days, bad days, good news, bad news. Let's reach out to each other. What a support system we can have. Welcome friends. I hope to hear from you!!!
Hello... Finally making my way here with the ability to type! I am a 27 year old mom with FMF I am not alone with that disease in my family. My children, sister, mother, great aunt, and sister in law all have it and I’m only listing the living relatives that admit symptoms. Only three of us are being treated with colchicine. The minors are being closely watched and tested for a more firm diagnosis before colchicine begins. I hope to one day make the trip to see Dr K. along with most of my family. I believe were one of 3 families in the world that have this in an autosomal dominant fashion. I started symptoms in infancy and so did my children. One has dropped fevers where his body temp drops down to 94.8ax /96 orally during the early part of his attacks and then 99ax/100oraly during. At the times his temp is dropped he seems in a lot of pain. My mother also does this and is in a lot of pain... but my son is only 3 and when he doesn’t feel well he doesn’t want to talk about it... my other son gets joint pain, mainly his knees and feet, stomach pain, he also has 100 degree fevers for weeks at a time accompanying this. There doctor is researching this disease and actually running blood tests…. AND hearing me out when I explain there symptoms… so very happy on that front… there last doc didn’t even write anything related to FMF in there records!!!!....
I will write more as I feel I am starting to ramble and vent… I just had to say hello and I hope to get to know some other parents of FMF kids.
Thanks for reading,
Amanda
I just founf this group. I am an fmf kids mom. This is a great opportunity to share information, what works and whot does not. I have a 7 yr old with fmf, on colchicine. Doing better, but not great. She sees a ped. reumy at the Cleveland Clinic in Cleveland Ohio. He is great and helping us to get this under control. We are from Michigan.
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