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Hello,
I'm searching for others with this gentic disorder, It hit me at age 17 and it has been hell...I know others have this and would love to hear from you, Please contact me. Perhaps, we can help each other with what knowledge we have about this disorder. Thank you, Shelley
Screaminprincess@yahoo.com
Hi Shelley, I am 47 and have had FMF that hit me at age 5. Of course nobody knew what was wrong with me until 2003. My fevers didnt start until I was 36. I don't know if you are aware of this but social security has deemed it disabling. I am on disability. I know how hard it is to have a career with this disease. I would love to talk if you want to. My son was just diagnosed with it as well. he is 19. I was wondering what your heritage is.
write me
Sue
Hi,
I finally have been diagnosed with this after living with this condition for most of my life im now 25 as a child i was very sick i was born here in perth western australia but doctors just put it down as stomach migraines,he said that its common in young children and that eventually i would grow out of it but when i turned 12 and began menstrating it became severe and i was sent to pmh to find out what was causing these severe attacks during my menstrual cycle,at first doctors put down as endometryosis a disease affecting the uterus lining,but further testing proved it wasnt after several laporoscomies and endoscopies it proved there was nothing.growing up i had a lot of joint pain and doctors still kept saying it was growing pain by the age of 13 I was diagnosed with juivinal rhematiod artharitis then put on anti inflammitory tablets,as my mum has arthiritis it was put down to i inherited from her.I was sent to see a rhematoid specialist but that really wasnt much help.i was having these attacks very regularly and i was having atleast 3 to 4 days off school/wrk.as i grew older i stopped going to the doctors coz it was pointless in seeing a doctor who continually told me that it was now irritable syndrome,finally i was admitted to hospital for 3 days were they were not sure if i had appendicitis,then finally they decided to remove it anyways and wen it was removed finally doctors said it was chronic appendicitis,i was finally happy as 8 months passed with no attacks i was convinced it was just chronic appendicitis but eventually the attacks began n i was in unbearable,i dont hav kids so to me from what people describe childbirth it felt like i was giving birth.the pain made me double over vomit n temps would go well into 40s but stil doctors just said its irraatable bowel syndrome.Finally i was very frustrated n ask the doctor to put me in surgery n remove my gall bladder my doctor refused n said he believed it was in my head,(im one of ten children)so doctor put it down to me wanting attention.althoiugh i was in imense pain.He wanted to refer me to a pyschologist to c if it was in my head but wanted to prove me wrong.I went to the surgon months later and after a ten minute consultaion with him he said i belive you have fmf.what a relief that i was not crazy and this thing that took my life over finally had a name.he put me on cholocine staright away n said the moment u feel an attack comming on take these n if they wrk then it is fmf im still waiting to have the genetic testing done.i am happy for u that you found out early as this takes control over ur life i could basiclly tell u the exact month that my next attack would be n i became afraid of doing anything thatwould result in being sick.Just some helpfull suggestions eat only lite products and reduce fat intake as well as avoiding acidy foods.I know this is a really long email but this has ruined my childhood n my teenage years and if i can help someone else out i am more than happy to.I hope you find some helpful info from this.
Take care
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