Familial Mediterranean fever (FMF)

Discussion and support for everyone enrolled in a familial Mediterranean fever (FMF) study at the NIH and their family members.

Discussions

Raising money for FMF

By Proverbs31-10 · Posted April 13, 2012
0 replies
Hello My Son is 3yrs old an was diagnosed with FMF at 1yr old. He suffers with many other autoimmune diseases. An with lack of funding an health insurance not covering very much I have been thinking ...

Fever Syndromes and muscle laxity/hypotonia

By GBasile · New reply March 26, 2012
1 reply
Hi Everyone, Just wondering if any of you or your children have experienced hypotonia/muscle laxity? Our son has been physically delayed and has hypotonia/laxity and also has trouble with balance and ...

Good clinic on east coast or Florida?

By Leahmaines · Posted March 11, 2012
0 replies
I think it is unlikely I will get into a study for fmf at huh because I was just diagnosed at 49 years old. I have been sick and in pain most of my life, and now I am in pain every day. Does anyone suggest ...

Heterozygus FMF?

By GBasile · New reply February 22, 2012
4 replies
Hi all, I am glad to have stumbled on to this site. We have a four year old boy who has been sick on and off his whole life. He began having severe respiratory problems as a baby and stomach pain. He ...

FMF and HIDS

By GBasile · New reply February 17, 2012
5 replies
Hi everyone, We just got genetic test back and our son has the mutations for FMF and HIDS. Does anyone here have more than one fever syndrome? Colchicine seems to have many side effects. Does anyone take ...

Five mutations for fmf

By Leahmaines · Posted January 28, 2012
0 replies
I have five hero mutations for fmf... Does anyone else have this ...

FmF

By Proverbs31-10 · Posted January 6, 2012
0 replies
I feel sometimes family members just don't understand what we go thru when you have a child with FMF it is hard on them an you n the whole family. It is truely only God tht carries us thru . It's as if ...

Has anyone with FMF also had problems with anemia?

By GBasile · New reply January 4, 2012
3 replies
Our son was recently diagnosed with FMF and also suffers from anemia despite taking iron. Does anyone have this problem? What do you do about it? Thanks, Garnet ...

Does My Daughter have HIDS or FMF?

By momtolpem · Posted November 30, 2011
0 replies
Hi, My 14 month old daughter has been having periodic fevers since about 6 months of age. They have been on a 21 day cycle, but lately have increased to every 14 days. She has been diagnosed with a periodic ...

Familial mediterrAnean fever

By Kchikka · New reply June 13, 2011
2 replies
My son was recently diagnosed with fmf. He was sick for a year before we finally found the right doctor to find out what he had. The pediatrician kept saying it was a virus. He has been on Colcrys for ...

Anyone have TRAPS and FMF

By makennas_mom · New reply April 28, 2011
1 reply
My 6 year old daughter has been sick most of her life and has been tested for everything under the moon, except Periodic Fevers, until recently. She has mutations for both TRAPS and FMF. She is currently ...

Periodic Fever Syndrom

By kaidsmom · New reply January 22, 2011
1 reply
My son is 8yrs old and has been suffering constantly for the last 15 months. What started with a bout of the flu last Oct (2009) turned into Pneumonia for the 4th time in 10 months. After that, he just ...

alternative to NSAIDs?

By nerdybiogirl · New reply April 8, 2010
2 replies
Hello, My boyfriend has FMF, and regularly uses non-steroidal anti-inflammatory drugs (NSAIDs) to manage the pain and inflammation. The problem is that frequent NSAID use is associated with stomach problems ...

Clinical Trails

By Stephanie123 · New reply March 22, 2010
6 replies
My son has FMF and he is 5 years old. We are currently doing a clinical trail from the Cleveland Clinic in Ohio with the injections drug rilonacept...is anyone else currently this study also ...

fmf and cronic illnesses

By paula_mosseri · New reply December 18, 2009
8 replies
I am the parent of a child with fmf. I was wondering if anyone else is experienceing cronic illness, other than fevers, with fmf? She misses so much school, and not because of the fevers ...

Throat issues and FMF

By Kaylea-Leanne (Inactive) · New reply October 20, 2009
2 replies
My son was diagnosed in 2007 with FMF. He has since been on colchicine liquid since he wouldn't swallow the tablets. He is now 6 years old. Has not really had any fevers since other than some strep throats/ear ...

Periodic Fever Conventions?

By rybrans07 · New reply May 14, 2009
8 replies
Hi my name is Kim and my daughter Sarah has FMF. I read on someone else's journal that there are Conventions for families dealing with Periodic Fever Syndromes to get together for the weekend. This journal ...

Sarah has protein in her urine as well as blood-anxiety ridden Mom

By rybrans07 · New reply April 23, 2009
9 replies
Today I received the phone call none of us want to hear. Sarah's doctor called to tell me that her urine was positive for proteins and blood. He didn't say much else except that he was going to discuss ...

Sharing our Experiences

By rybrans07 · Posted November 17, 2008
0 replies
My daughter Sarah is a patient at NIH as well as Children's Hospital of Philadelphia. After 2 long years of sickness she was finally diagnosed with FMF in April 2006 by the Doctors at CHOP (Children's ...

Mary's blog entry Feb 08

By Mel · New reply February 14, 2008
2 replies
Hi Mary I am an adult with TRAPS, similar to FMF, and came upon this community by accident! I'm sure you will find help here but there is also a very active world wide Yahoo group called FMF support ...

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