http://health.groups.yahoo.com/group/nomidsyndrome/ N.O.M.I.D/C.I.N.C.A. Syndrome Fri, 20 Nov 2009 19:32:04 GMT sfokaren2003 http://health.groups.yahoo.com/group/nomidsyndrome/message/2357 http://health.groups.yahoo.com/group/nomidsyndrome/message/2357 I have been thinking of all today, as I saw the horrible floods and devastation in your countries, and hope that all in our group were spared. My prayers go Tue, 17 Nov 2009 14:33:08 GMT lornawilkie17 http://health.groups.yahoo.com/group/nomidsyndrome/message/2356 http://health.groups.yahoo.com/group/nomidsyndrome/message/2356 Hi Colin thankyou for your reply I am sure I have spoken to you by telephone many many years ago, the problem with this condition seems to me that every child Tue, 17 Nov 2009 12:28:59 GMT COLIN BAILEY http://health.groups.yahoo.com/group/nomidsyndrome/message/2355 http://health.groups.yahoo.com/group/nomidsyndrome/message/2355 Lorna   Although diagnosed with CINCA/NOMID our daughter, Matilda, is believed to possibly have at least one other underlying condition.  A complexed case Tue, 17 Nov 2009 11:52:32 GMT lornawilkie17 http://health.groups.yahoo.com/group/nomidsyndrome/message/2354 http://health.groups.yahoo.com/group/nomidsyndrome/message/2354 Thankyou so far to the two people who have responded to my question regarding anakinra, my son is on the correct dose of anakinra for his weight and is also on Tue, 17 Nov 2009 03:41:14 GMT mike.oisten http://health.groups.yahoo.com/group/nomidsyndrome/message/2353 http://health.groups.yahoo.com/group/nomidsyndrome/message/2353 Hello. Our daughter was diagnosed at 8 months as of April this year and she had similar pain problems as well. The doctor had her on Naprosyn twice a day and Sat, 14 Nov 2009 05:13:32 GMT Piyush http://health.groups.yahoo.com/group/nomidsyndrome/message/2352 http://health.groups.yahoo.com/group/nomidsyndrome/message/2352 Hi, My daughter has NOMID and is 16 months. She was diagnosed at 10 months and started Anakinra immediately. After anakinra, she has come a long way. Fri, 13 Nov 2009 20:32:49 GMT lornawilkie17 http://health.groups.yahoo.com/group/nomidsyndrome/message/2351 http://health.groups.yahoo.com/group/nomidsyndrome/message/2351 Hello to everyone I often look at this site as I have a son diagnosed with cinca and has been on anakinra since march this year, whilst it appears to have Fri, 13 Nov 2009 04:59:24 GMT sfokaren2003 http://health.groups.yahoo.com/group/nomidsyndrome/message/2350 http://health.groups.yahoo.com/group/nomidsyndrome/message/2350 Colleen, Thanks! I am excited about finally finding it too. I am also sharing it to anyone I can for the holidays. I am looking for normal fundraising too, Thu, 12 Nov 2009 19:37:21 GMT Colleen Paduani http://health.groups.yahoo.com/group/nomidsyndrome/message/2349 http://health.groups.yahoo.com/group/nomidsyndrome/message/2349 Thanks Karen! I've heard of this, what a fantastic program. I will forward the link to all my family and friends!!! To: nomidsyndrome@yahoogroups.com From: Thu, 12 Nov 2009 17:16:41 GMT sfokaren2003 http://health.groups.yahoo.com/group/nomidsyndrome/message/2348 http://health.groups.yahoo.com/group/nomidsyndrome/message/2348 Dear All, This is from Karen Durrant, and I have set up a free account with SmartRaise so anyone that likes to shop online can register for free and shop Thu, 12 Nov 2009 12:25:14 GMT newbjjfriends http://health.groups.yahoo.com/group/nomidsyndrome/message/2347 http://health.groups.yahoo.com/group/nomidsyndrome/message/2347 I created this cool friends network and added you to my friends network. Hit-up now: http://onshine.zoomshare.com/files/girlfriend.htm Mon, 09 Nov 2009 07:26:35 GMT newaikfriends http://health.groups.yahoo.com/group/nomidsyndrome/message/2346 http://health.groups.yahoo.com/group/nomidsyndrome/message/2346 I read your profile today, I thought I would drop you a line and hope to become your friend! Check my personal page here: Sat, 07 Nov 2009 17:17:44 GMT sfokaren2003 http://health.groups.yahoo.com/group/nomidsyndrome/message/2345 http://health.groups.yahoo.com/group/nomidsyndrome/message/2345 Dear All, This is a great new art contest to increase awareness and empower patients with rare diseases. If you or your child wants to enter, please read the Tue, 03 Nov 2009 16:00:18 GMT Marie Parker http://health.groups.yahoo.com/group/nomidsyndrome/message/2344 http://health.groups.yahoo.com/group/nomidsyndrome/message/2344 Find what you love at Mall-good.com 2009 new electronic products preferential promotion Dear friend: If you are confused with what electronics (aCellular Tue, 27 Oct 2009 10:10:49 GMT karen moore http://health.groups.yahoo.com/group/nomidsyndrome/message/2343 http://health.groups.yahoo.com/group/nomidsyndrome/message/2343 Hi All   I saw professor woo friday at great ormond st and she said that yes charlie should have the dead vaccine for swine flu, he has had his seasonal flu