Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
We got 14 responses. Not the 100 I had hoped for lol but I'm still very happy. Here is a link to the published form:
https://spreadsheets.google.com/pub?key=0Ah8YUqKh3wAvdHZVUkctM2NxNFllZFZtMF93RE9wX3c&output=html
When I am viewing the document I can select "form" and "view a summary of responses" and it will show the percentages. I CANNOT for the life of me get those responses in the actual form (ugh) sorry :( It has been suggested to me to ask for responses from IDF. What are your thoughts? Are you happy with our 14 responses or would you like to see more?
https://spreadsheets.google.com/pub?key=0Ah8YUqKh3wAvdHZVUkctM2NxNFllZFZtMF93RE9wX3c&output=html
When I am viewing the document I can select "form" and "view a summary of responses" and it will show the percentages. I CANNOT for the life of me get those responses in the actual form (ugh) sorry :( It has been suggested to me to ask for responses from IDF. What are your thoughts? Are you happy with our 14 responses or would you like to see more?
I will continue to try to add them and update if successful
https://spreadsheets.google.com/viewanalytics?formkey=dHZVUkctM2NxNFllZFZtMF93RE9wX3c6MQ
Is there any reason we can't have people contribute to it on an ongoing basis? I mean, new people are joining frequently. Unless, of course, it's too much work to maintain.
If you want, I could also post it on my blog.
Before being diagnosed, I haunted the bookstores and looked endlessly online for something, anything to help me figure out what the hell was going on with me. I was in a hurry because at that time, death was literally nipping my heels. Nothing. Bubble boy probably, PID probably something, but whenever I dug deeper into these books I knew it was not me.
Can you imagine the significance of a simple book written by CVIDer's... for fun I would call it, 'My crazy mixed-up world before Diagnosis' or something akin to that. I would put the emphasis on the insanity that becomes your life for those years before you know. At that point you have caught some attention and hopefully will end up providing a key for those searching for anything to grasp on to. Maybe there IS a book by now. After all I quit looking over 2 years ago. I bet there is not a book written by one of 'us' though. I would still love to read about the journey of others. There must be lots of interesting stories along with some true revelations about how CVID affects each of us in such special ways. I would try to write it myself, but I'm just too damn tired to take on such a project. :)
Thanks again Kelli for all your hard work and tenacity.
Here's my thoughts - I may tweak to add fibromyalgia, crohns, juvenile arthritis, and then update the ones who answered that to reflect it.
I really think this is something we can definitely keep ongoing everyone. How exciting to see it all come together :)
Fezzy this may well turn into a book, who knows lol i think its a great idea. I think for me, cvid turned out to be different then what my docs told me. The rest of them have heard of it, but know nothing about it. Would be so helpful. Hmmm there's a website where you can put in your idea of what you need grant money for and "donors" can go on and donate to your project...hmmmm LOL