Hello, My name is Sherri and I have a daughter with NOMID. I am so sorry to hear of your little one having so many problems, I know exactley what your going...
Dear Sherri, Jim and Family, and also Lisa, Fynley's mom, So good to hear from you all! I have been wanting to write you for awhile, and I know I tried when...
Hi all, sorry for not being touch these past few months.We will be at the NIH tomorrow to. Alex is now on the max dose of the kineret and although he has more...
Hi Karen, I just wanted to say that if you want help in the UK regarding a charity or fundraiser for CINCA/NOMID I would be more than happy to help set it up....
Dear All My daughter and I are giong back to the nih on July 31-6 of augst. if anyone is going toere that time let me know .mayve we can get together .I'm a...
Hello to all from Michigan, I feel almost as if I shouldn't be on this site as I have not been online much with all of you. But Erika (my grandaughter) will...
Hi all, It was wonderful meeting Michelle and Karen this past week. And I know that Alex enjoyed playing with both Seth and Kiren.We will be leaving the...
Hello Everyone, Karen and Kate, I am so glad you guys were at the NIH. It is such a great thing to be able to talk to other parents. Kieran had such a good...
Michelle, thank you for your wonderful words,and Kieren I am so very proud that you are doing your own injections, keep it up.Michelle the reasons that we...
hi kate, Holly had a full V.P shunt put in when she was 2yrs old. before she had it, her spinal tap presure was huge.Hollys on asparin to thin her bloods and...
Hi Lisa,as you know trials are being done both here and in europe,however europe is a little behind as anakinra was not readily available at the begining. I...
Lisa, I have no right to ram the NIH down your throat, I'm sorry. I just wonder how long it will take to get an appointment at GOS. regards Kate please feel...
Dear Kate and Michelle, Thanks so much for all the chats and fun on the NIH visit! I am so glad we got together, and wished we had more time. I too have been...
Dear Kate and Lisa, I was thinking that if you could look at the Amazon.com website, down in the left bottom corner box is an program called "Amazon Honor...
hi lisa, g.o.s.h have been great with Holly, she has been treated by them since she was 9months old and was amongst the first few to by diagnosed with...
Sorry Melhoney, we must sound like there is no better place than the states for medical care. I just get upset when Doctors drag there heels especially as...
Hi Karen, I wonder if you could make an appointment at Amgen with head of marketing. as I have already mentioned to you that due to the drug problems with R.A....
Hi Kate, John and all other parents with NOMID (CINCA) children. My computer needed major repairs and I am just now getting to my e-mails. Kate when Zachary...
Hi Kate, Sorry I wasn't there when you were there at the Children's Inn, it would have been fun! Miranda is doing well, other than getting very fat! there is...
Hello All, I wish that this were easy for me to write tonight, but I am at a loss as to know what to do being that I am here back home while my daughter and...
Dear All, That last post was from me, Karen Durrant. I bumped the send button by accident, (while trying to do something else,) and it went off to the group...
THANK YOU Karen for taking the time to respond to my email. And explaining all that you did. I FULLY understand MUCH better now. And today can breathe a sigh...
just a little note to say thankyou for all your advice and we have finally got fynley in GOSH we are seeing PROf Woo on Friday for the first time so will...
Dear Jacie, I am so glad that you are feeling better, and that I could be of some help. Do not feel bad, it is ok to vent your frustrations, we are here to...
hi lisa, how did it go today with prof woo, i hope fynley got on ok and didnt get too upset with any tests they did. did she suggest putting him on the...
Hi Karen Friday's visit to GOSH was okish, i suppose at least we have now been seen there, but there was no medical notes at all from Portsmouth which was...
Oh god what a pain... at least she had something, and at least now you will get some very much needed support, bloody hospitals though cant believe they...
Dear Colin and Lisa, I was so hoping more would be done, and I know how frustrating it is to find that the doctors offices have not sent the medical records as...
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