Dear Karen,

It was kind of you to respond to our e-mail. We are more than pleased that
anakinra has worked well for Seth, and that Molly's story helped to send you on
this track.

John and Kate Barton did the children a good service in setting up this
NOMID/CINCA site. We wish you well also with your site and the NOMID Alliance.

With every good wish,

Yours sincerely,


David




-----Original Message-----
From: "sfokaren2003" <sfokaren2003@...>
To: nomidsyndrome@yahoogroups.com
Date: Fri, 09 Mar 2007 17:26:08 -0000
Subject: [nomidsyndrome] Re: Molly

Dear David,

Thanks for the update on Molly-I have thought about her of and on,
since her story on the nomodsyndrome.com site when Seth was 2-3 years
old got me thinking about NOMMID as a possibility, even when the
doctors didn't think so! Seth too is doing so well on the Anakinra,
and I am glad that Molly is doing so well now too. Seth will be 8 in
September, so they are close in age!

Best of luck to you, and keep in touch! I had corresponded with you
all ages ago when I was seeking answers, and truly appreciated your
help. Without that nomidsyndrome.com site to read everyone's stories
we would still be in the dark with things. I encourage anyone that
hasn't looked at it or posted their story to do so, and thank the
Barton family for creating that site. You can see Seth's story and
photos on the site, and it may be of interest to you since he is a
milder form of the symdrome, like your daughter. You can see a before
and after Anakinra photo of him too. Within the first day on the
medication, his rash was gone, and within days he was full of energy
and less pain. It was a miracle for him.

I now run the nomidalliance.net site and started the non-profit "The
NOMID Alliance" last year to help get more awareness about these
symdromes out there in the world. Soon we hope to have a brochure
made up and will try to target various doctors so things can get
better for diagnosis and treatment of these syndromes.

I am not sure if Kineret (anakinra) is approved for kids here either,
but it matters not to me, considering it had changes Seth's life in
miraculous ways too, and is better than any toxifying corticosteroids
or other options that were being used to treat these patients prior to
it. Sorry to hear that it was a struggle to get the medication in the
UK. Things need to get better!

Best wishes,

Karen Durrant