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Periodic Fever Syndrome Conventions?

rybrans07
  • By rybrans07
  • Posted November 15, 2008 at 12:29 pm · 6 replies
  • Shared with the public
  • Edited November 15, 2008 at 12:29 pm
0 Recommendations

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 was posted in 2006-which I know is a long time ago, so I was wondering if anyone else had heard of somethng like this? I have yet to come together with other families going through the same struggles. Any replies would be greatly appreciated. Thank you all, Kim

Explore topics in this journal entry and replies:

TRAPS Fever

6 replies

nikki228

Look up "Nino Todoro" and contact his mom, Lori. She is the one that coordinated the PFS conference at Hershey Med. Center in 2006 & 2007.

rybrans07

How would I go about finding Nini Todoro, it seems they haven't posted since 2006? I did post a reply last week, but no response yet. Thanks again, Kim

nikki228

email address: jtvtatat@aol.com

Jordensmom

My son has FMF also, he is now 5. I would be interested in this convention also. Please keep us posted and let me know how I can help!

marie3

Hi Kim,

I think I met you at NIH, sometime in 2005. I was in a clinical trial from Feb. 2005-Feb. 2006. You and your daughter were waiting for a shuttle; my mom and I were waiting as well. We were all talking and you discussed your daughter's fever issues with us. Every three weeks she comes down with a 103*-105* fever that lasts for about a week or so, and her joints ache---correct? Your daughter must be about 8 or 9 now. Hope she's doing better.

My mom and I periodically talk about all the people (patients and staff) we met at NIH during that year. My mother brings you and your daughter up in conversation from time to time. Remember that lady we met, with the little girl........... She really felt bad for you and your daughter.

Anyways, I just wanted to say "Hello." There are so many people that touched our hearts at NIH. Unfortunately, we're all connected through illness.

Take care!
Marie

silky

Hi,

My daughter was diagnosed with TRAPS in March. I was wondering if anyone had found a link for the conventions or were it will be next?

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