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
--- In nomidsyndrome@yahoogroups.com, "David Campbell"
<D.Campbell@...> wrote:
>
> Dear All,
>
> We haven't been in touch for a long time, although we do read the
e-mails about what is happening to the children.
>
> Molly is now aged 8 years, and a year ago commenced daily injections
of Anakinra. The effect was like a miracle. Only hours after the first
injection her rash disappeared; she no longer has conjunctivitis, or
pains in her stomach, head and joints, and she feels better in
herself. All her blood tests are back to normal. This drug isn't
licenced in Gt. Britain for children; we're not sure about the U.S.A.
>
> Many of you will recognise our uphill struggle, at every step, to
get to this stage. Through the internet, we ourselves eventually
located a doctor in London. We had to persuade our consultant to refer
us to him. We had not heard of CINCA/NOMID, but simply by looking at
Molly -by then 2 years of age- he suggested it as a possible
diagnosis. He told us about genetic testing being done in France,
unavailable in Britain at that time. Again we had to take the
initiative in obtaining a referral, and a further five years passed
before we could start the Anakinra.
>
> We won't try to explain how thankful we are that research brought
this drug forward when we needed it.
>
> We hope that you take heart and hope from our experiences.
>
>
> Evie and David
>