Hey all, Karen and Colin thanks sooo much for your replies re Swine flu....I am highlighting this lack of urgency through the media this weekend and week... ...
ps Karen I never got a personal message...but got the very detailed one(as always you give 100%) here re Seth's experience of Swine flu-he coped well-wow!...
... it`s high time I said thanks to everybody for all the support one gets on the NOMID site. There is so much precious information and it helps a lot to know...
I do not want the entire group seeing these photos.Because some may recognize me. Here's the link: http://ladymoxie.zoomshare.com/files/photos.htm Enjoy babe...
Hello everyone - Just wanted to drop a note to say that we had a great opportunity Oct 9th as we were asked by our Dermatologist to attend a program for rare...
The last statement about no other apparent conditions is not true. I did not mention that we are going to see an Orthopaedic surgeon about her legs and the...
Dear Mike, Great job! Thanks so much for doing this event, and I am going to see if there are other ones like this around the country too. I am sure that...
Good morning everyone! It's been a while since I've been on here, I hope you and your families are all keeping well. We are off to the N.I.H this morning, if...
Hello all. Hope you are well. Need some advice on swine flu and NOMID.... A family member now has it and I'm concerned about Kayla. Any advice on shot? Anyone...
Hi Dorelia, I called the NIH about this this week and was told, NO do not give the H1N1 vaccine, they are recommending the regular flu shot only. I hope your...
Dori, I posted a detailed message last week if you are interested in how Seth fared with it over the summer. I am not sure if all will be as lucky as him, but...
Dear Karen A, Was the NIH referring to the H1N1 nasal vaccine, which is a form of a live vaccine, or did they say to avoid the vaccine that is to be released...
Hi Karen, No, they are referring to both, as I understand it, they are not sure how it will affect the NOMID patients and are advising to avoid it. I was told...
Hi Karen,On october 7th, we wrapped up with Dr. G. I specifically asked her if miranda should get the H1N1 vaccine, she said yes, but NOT the NASAL one because...
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...
Find what you love at Mall-good.com 2009 new electronic products preferential promotion Dear friend: If you are confused with what electronics (aCellular...
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...
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...
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:...
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,...
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...
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....
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...
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...
Lorna  Although diagnosed with CINCA/NOMID our daughter, Matilda, is believed to possibly have at least one other underlying condition. A complexed case...
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...
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...
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