Donna's experience with FMF
Written by Donna, published 3 months ago.
Started at the early age of 2.
I was 2 when I started getting attacks. Just like other members, was sick with high fevers, vomiting excrutiating pain on the 2nd day and total weakness the 3rd. day. At the same time my 2 sisters were also suffering the same symptoms. My doctor finally (after having appendix removed and a million tests and hospitals)said that I will out grow it.
But of course I did not. In 1982 I moved from NY to Massachusetts, continued having attacks and finally was referred to a gastroenterologist in the area. He referred me to Dr. Stephen Goldfinger of Mass General Hospital. He sat there, pen in hand and listened to my story. Almost immediately he smiled as he was listening as if he already knew (and he did) exactly what I was suffering from. He prescribed the colchicine and since then I've had a few attacks, mainly because I would forget to take the colchicine, however they were mild compared to the attacks I used to get. I have 2 sisters also diagnosed with FMF. We all continue to take the colchicine and are doing great.
I remember when I was little, and suffering in bed, wracked with pain curled into a fetal position and praying that I would just die or someone would discover a little pill that I could take that would cure me. And THANK GOD I found my angel of mercy...Dr. Goldfinger. Later I had the genetic test which confirmed his findings.
Then recently I found this website and found out that there are hundreds of people with the same condition. It is so theraputic to read others storys of their experiences with FMF. I think the hardest part is that I still feel like the people around me don't really believe or take me seriously. They say they do, even my husband and kids....but they have no idea of what I went through because they did not know me then. They never saw the real suffering, before I found colchicine. I really do not feel as if they take it seriously. It seems the psyhcological effect of this condition is almost as bad as the ms disease itself.
I am so happy to be part of the FMF Community (not happy to have FMF of course). Many Thanks.
Written by Donna, published 3 months ago.
2 comments for «Donna's experience with FMF»
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Thank you for telling your story. I have 2 children who have FMF, and I know first hand the psychological effects of this disease. It's hard on the patient and the parents. There are a lot of times when I can't believe this is really happening to us. My son is 8, he was diagnosed at 7 and began taking Colchicine. The drug has been hard on his little body, but he is much better now than he was a year ago. It's hard watching your child suffer the fevers, vomiting, nausea, and the pain. The pain has been the hardest part. Our daughter is 4 and has been having episodes of fever, pain, and vomiting since she was 2.5. She's too young to start Colchicine. We're waiting until she's old enough to begin the drug. Plus, there's no other children in our area who have this disease or parents who can be a support system for our family so its very lonely for all of us. It seems people who have no experience with this disease can't begin to understand all of its effects both mental and physical. My husband and I had no idea that we were carriers since no one on either side of the family has ever been diagnosed with FMF. There's a lot of guilt that goes along with FMF for the parents. I wish that I could take away their pain or at least endure it with them. Do you have any advice for a mother?
Donna, I'm happy that you're feeling better. I wish you a blessed life with healing of your heart from this very painful disease. I pray that your family can listen and understand what you've been going through. May you be surrounded with love.
Tauna
Children in the Mediterranean countries begin taking colchicine at 18 months. There is no need for your little girl to experience this pain. Please see another doctor and please do join our fmf_support group:
FMF Support mailing list:
fmf_support-subscribe@yahoogroups.com
Nancy