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ScaredUnknown
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-- 06-01-2007 @ 12:08 PM
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I am finding very little in the way of support groups for this disease, so I am surprised this site is not more active.
I know for myself, I am need of support. Is anybody out there?
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beverly
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-- 06-07-2007 @ 8:15 PM
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I'm here and floundering like you are. Have you tried primaryimmune.org. I am waiting for them to get back to me with a volunteer in my geographic area who can help me.
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LClcoombs@ptd.n
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-- 07-13-2007 @ 12:47 PM
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I've been looking to. There seems to be support groups for everything but this. I'm at a loss. Perhaps we can keep this going. Maybe we can get to a fourth person! Any takers! 
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Reidiemac
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-- 07-24-2007 @ 11:11 PM
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I would love to be the 4th person...on behalf of my daughter, Abby, who is 6. We can't find anything out there regarding support.
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sezell
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-- 07-27-2007 @ 12:14 AM
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I would love to be a 5th. I've had CVID for the past 10 years and have been through alot- including living overseas with it.
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Diane
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-- 07-28-2007 @ 5:34 PM
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HI, MY NAME IS DIANE. YOU DIDN'T MENTION YOUR SPECIFIC IMMUNODEFICIENCY, BUT I HAVE HAD CVID FOR 38 YEARS AND WOULDN'T MIND IT IF ANY FELLOW SUFFERERS OUT THERE CONTACTED ME. I CAN BE REACHED AT SPICRC@AOL.COM
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LClcoombs@ptd.n
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-- 07-29-2007 @ 6:40 AM
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Thank you for being the 4th person!! Hopefully, this will grow! As for Abby, I am sorry to hear she is only six, but good that she could be diagnosed early on. It's a dual-edged sword, I know. As a young retired teacher, the only advice I can offer at this point is to help her not to be or feel like a victim. She will get her strength from you. I am sure Abby is good at many things, but find what she excels at and encourage (not push)that part of her. She may like photography...start with a disposable camera; or go to a craft store and see what interests her. She's 6. Hobbies will come and go. But, as her parent, you will see what lights up her eyes the most! Being good at something will give her the confidence she will need as she goes through school; it will certainly make time pass when she is not feeling well; and it will give her some much needed time with you. Anything she creates shows she enjoys the life around her. Her attitude towards this albatross will come from yours. Let us know how Abbey makes out, please! LC
This message was updated on 7-29-07 @ 6:46 AM
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edwardsc
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-- 07-30-2007 @ 9:33 PM
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My daughter is 6 yrs old and has Selective Antibody Deficient Syndrome. I am not sure what you all are dealing with , but, I feel the same way you all are and count me in for needing support.
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madolynsmommy
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-- 08-01-2007 @ 12:50 PM
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Hello! I am new to this post! My daughter was diagnosed at age 18 months with Selective Iga Deficiency. She had become ill frequently at age 9 months. Right after I stopped nursing her. Our family doctor kept syaing she just had this or that, I'm sure you have all been there, but being a stay at home mommy and her not being in public a lot, I knew there was something wrong. We finally took her to a pediatrician who tested her for allergies and her immune system, we then found out what was wrong, and we awere sent to a specialist in Indianapolis. Long story short!!
I recently started a group on myspace for support and friends. If anyone is interested in joininng there, I check it alot, look underSelectiveigadeficiencysupport in the groupus topic.
I would love to hear other stories and how you all mange financially and emotionally. It is draining our family. We are even thinking about selling our home.
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LClcoombs@ptd.n
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-- 08-02-2007 @ 1:55 PM
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 Hey, I'm Number 3 on this list and want to thank everyone for showing interest. I have an IgG deficiency. Not sure how long I've had it but was diagnosed in 2006. I've been sick most of my life (I'm 51)and been told it was all in my head, until several bouts with pneumonia in a few short months almost did me in. So here I am, still alive and kickin', oh yea, and cute as heck! We need that sense of humor, don't we?
My question... Anyone in pain most of the time? If so what do you do for it? Thanks! LC
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mom2cm
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-- 11-20-2007 @ 1:15 PM
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I was trying to find your topic on myspace and could not find it. I have a 3 year daughter with selective IGA deficiency and live in the the Indy area. I would really like to talk to you, our stories seem very similar. Please if you read this, email me at joelee2@insightbb.com Thanks Nancy
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mamfa
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-- 07-19-2008 @ 9:41 AM
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its been a while since anyone posted but i wanted to share that im in a web forum support group in a parenting forum. some of the parenting forums have special needs sections and if you try posting in them you might be supprised how many are arround.
Sam
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Jack64
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-- 08-14-2008 @ 6:54 PM
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Newly diagnosed 43 y/o male here in South Florida. I was diagnosed with SID (Specific Immuno Deficiency.) My infection of choice has always been in my sinuses, although I've had episodes of Giardia infections as well. Already had my first infusion with the Sub-Q Vivaglobulin. It wasn't as bad as I thought it was going to be. We'll see how it goes doing it once a week. I was having to take anitbioitics just about once a month to keep from getting low fevers, malaise, and of course the congestion. For years I have battled the mucus. I started the Sinus Rinses/Nasonex spray twice a day which together totally rock. They have been very beneficial...I recommend them highly. If anyone wants to talk about this condition, email me at jackfarinas@comcast.net. Jack
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