Guest guest Posted March 6, 2000 Report Share Posted March 6, 2000 Judy I have approved the subscription and I am going to forward the two emails as your introduction. The list archives are on onelist.com site. Just logon, choose the PedPID group and click on messages. Read or run a search through them and see if there is anything you want to write in about. Please feel free to re-introduce yourself and let us know how your family is doing. How old was Tim when he passed? Ursula - & Macey (4 yr old w/CVID) mom Re: Cookbook Ursula, Thank you so much for writing, yes I would be very interested in your suggestion to write about the book on th Primary Immune Deficiency web site. I have begun to look over the site, how appropriate to have the wierd symptom survey.....only a fellow patient or parent could understand exactly how important this is! My husband has IgM and IgA deficiency and Chron's disease, arthritis andmuch more. His Mom has CVID as did our son. Our son, Tim was diagnosed first with the adults diagnosed later. We are the coordinators for the Immune deficincy foundation in western PA, I wasn't sure we could go on with this after Tim's death, but it seemed to be the right thing for us so we continue. Pleas tell me more about your girls....where do you live? We are going to Seatle in May for the national IDF meeting. I am so glad you got in touch with me. My very best to you and your family. Judy Ursula, I have also requested a place on the mail list....I have no child affected currently but with the apparent genetic component in our family I continue to have concern for my two remaining children....especially with the later in life diagnosis of my husband an MIL. I would also like to use the group as a reference for the families in the W PA group as well as the national families I know. Judy Ursula wrote: > Judy, I saw your post on the cooking newsgroup and wanted to write > about featuring it on the Pediatric Primary Immune Deficiency web > site. If you are interested please respond.Ursula Holleman > uahollem@... and Macey's mom (4 yr. old with CVID, asthma, > sinus disease, GERD, kidney reflux, Sensory Integration Disorder, > Diabetes > Insipidus)http://home.att.net/~maceyh/ http://www.pedpid.comhttp://www.onelist.com/community/PedPID Quote Link to comment Share on other sites More sharing options...
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