Hi everyone, So sorry I haven't been on in so long,I do pop in and out but haven't posted in a while.I've been so busy with the Campaign against cutbacks. ...
Hi Aisling We are in the UK and I have just called our surgery to chase up and they are still unsure as to when the vaccine will become available. They are...
Hi Aisling, I have wondered about the vaccination here too, it is to be available here in Canada in the next weeks also. What I have not yet found out is if...
Interesting about Michael's teeth. Kieran has "weak" teeth too however his sister without NOMID has the same problem. The H1N1 vaccine available in the US at...
hi everyone  charlie had weak teeth also, his back 4 teeth went brown and had to be removed when he was about 3 and they then capped the next 4 teeth with...
Aisling, I hope that you all can avoid the H1N1 swine flu, and my heart goes out to you. I would discuss with your doctor about a personal plan for your...
Karen A, Seth used to have not cold flares, but prior to anakinra he flared all the time, so it was hard to know. After 2 years on anakinra, and when he was...
Aisling, For some reason my responses to people have not been posting for the past few weeks. Have your gotten my last post privately? If not, I wll try...
Dear All, There is a very exciting new community forming for rare diseases that will launch next month sponsored by NORD and EURODIS, the rare diseases...
Regarding everyone's teeth issues. I am a dental hygienist and high fevers during the development of teeth can cause discoloration and damage to the enamel....
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...
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