If anyone has pictures they would like to share on the Foundation website or share their story please email me @ stopcaidnow.com Lisa CEO/President for Stop Childhood Auto Inflammatory Diseases www.stopcaidnow.com

I would love to post pic of my son if I can figure out how. Want someone to see this crazy rash and share their opinion, cuz it's making me crazy!!

Send to my email stopcaidnow@aol.com I will forward to my medical board and see if they have an opinion. We will do what we can to help you and your son. If pictures are downloaded on your computer then send as an attachment. If you have trouble then feel free to call me 877.CAID.644 or email me and I will help guide you through the process. I know you are frustrated, let us see how we can help. Lisa Moreno-Dickinson

with his next flare up i will be sure and do that. is ankle ankle pain and swelling part of this? we hadso many dx before the said it was MWS. they thought it was JRA for a long time. Yes, frustated I thought for a long time we weren't ever goin get to the point of needing medication. I was wrong! my main goal is locating a doctor fairly close to home. Dr's round here never heard of it, noone has... someone suggested cincinatti so that may be option. just would be good to have one close to home.noone has evebn heard of it, so I think Jerrod is the only case of it here. thanks for support!!

Tarah I understand how tough this is on you and your family just know you are not alone. You have my support and I will help any way I can. Th need for more Dr.'s to be informed about these diseases is why I pushed for Project 1. The CME program will help educate the Dr.'s so that proper dx can be made and a treatment plan can be started. Brody gets a lot of joint pain from his condition. The swelling can definitely cause your son pain. Have you been to the Foundation site and read the information on MWS, and looked at the pictures of the children with CAID. I hope the site is helpful and if you read Brody's story you will learn it took nineteen months of continued testing including a gene test before we had a dx(diagnosis). Please hang in there and know you have people working hard on getting these CAID the attention it needs. Once the CME is avaiable I will send you information that you may want to pass along to your local Doctors. You can contact me anytime. My thoughts are with Jerrod and your family. Lisa

lisa, thanks so much. i have to go out for a bit today but have your # and would love to talk to you. what time zone are you? I am central. thanks again and would be good for us to talk? tara

I live in PA, so Eastern time. You can try me anytime! Lisa