too bad it is not in AL
i would go for it....

I'm not. I hope that I can be part of a study at Stanford.

Are they aware of your low IgA?

pidd? Wht is that?

Hi Animal,

PIDD stands for Primary Immune Deficiency Disease, of which CVID is one. It kind of throws me off for a moment when I see it sometimes too. :)

How much is the pay?

I am going to be participating in a study at the University of Maryland soon. I have to be inpatient for a week, then go back every month which they reimburse for travel, and pay for a place for my loved ones to stay.

To Mark: The pay is $150.00 plus food and drinks. My big night out! LOL

My son and I have been in a lot of studies. If anyone is in a study and they are looking for more volunteers we are always ready and eager. a study and they are looking for volunteers , ,we are always ready
My email is Lev@consultant.com.

@ mark i would be interested in one that traces families with several cvid patients and other immune disorders.
in my family my mom has ra, aunt lupus, 2nd cousin cvid, me cvid, daughter cvid, dad and brother gout. and i suspect my son has it he just does not want to test not sure why but i gave up he is 28 so nothing i can really do at this point.

i think that by looking at families with cvid they may get closer to finding the exact gene and could possibly "turn it off" i know my daughter and i have the same dna strand dont know if you and your kids had a dna typing done but our doc did it dont know if it is standard or not.

getting several families together may be the way to see what gene is responible.

in your contact with some the of researchers maybe you could bring it up we would be willing to participate if we could find a study.

let me know if you hear of any.

i think it could be a break through in the fight against cvid and other immune issues if they studied families with the known gene.

i have seen where they did this with a family with cancer it brought a lot of info that was very helpful in finding the gene.

Someone told me about it too, but can't go until I get the lungs under wraps :( Maybe next time

Bummer Kelli: Would have been nice to meet you in person.

Tomorrow I am taking my (well going with) my 23 year old son in to a primary care. He is always complaining about a "virus" I am going to have the doctor MAKE SURE they do a blood draw and measure his immunoglobulins. I sure HOPE he has normal immunoglobulins.

It kind of sounds like a red flag doesn't it Stimpy? I hope they figure out what it is, and I hope also that it's not CVID...

The "virus" thing, I know he has Herpes I Simplex, has had it since pre-school, I took him to dr. they diagnosed it as impitigo, but turned out it was herpes I simplex. It was all full of blisters going up the side of his face, sorta looked like shingles. Well every year, he gets it and it just drives him insane, I cannot stand it anymore, so I am going to go in with him to the dr. and MAKE that doctor give him a blood test to measure his immunoglobulins. He really has never had any infections, just this constant VIRUS junk.

hoping for the best for your son stimpy... i would hate for him to have cvid...but in our family it is def hereity so it may be in ours also. we have traced it back to my mother's father's side of the family. not sure how many others in the family have it or had it but i am sure if we had kept in touch better we would find more. i dont know if my cousin's children have been tested, she has 4 children it would be intersting to know if they have been tested.

Gosh really REALLY wish I could have gone as I don't have ANYONE in my family that is sick, on either side, we believe mine was acquired. Woulda been an interesting study :)