How you feel when you find out

February 28, 2007 at 3:58 pm 2 comments

From a CVID forum

I couldn’t have said it better myself.

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Entry filed under: Common Variable Immunodeficiency(CVID).

Definition The complexity of the body

2 Comments Add your own

  • 1. Karen White  |  March 1, 2007 at 9:15 am

    All of your reactions are quite normal. My beautiful 13 year old daughter was diagnosed with CVID in July after two repeat bouts of double pneumonia. I was as you were stunned at the diagnosis, wanting to know why, life expectancy, prognosis, what to expect, etc. etc. What I can tell you is this. After beginning treatment, your life will improve. My daughter, who was underweight before, has gained 20 glorious pounds and is doing quite well. As a mother, however, I struggle with this diagnosis daily. I have just about driven my husband crazy with my obsession with it. You should keep in mind that each case is different and because it’s quite rare different doctors will tell you different things. What you do need is a good immunologist/allergist who can get you going on your IV/IG treatments. Your life will improve — I promise. The biggest thing I can stress to you is to educate yourself wisely about this illness – DO NOT SPEND TOO MUCH TIME ON THE INTERNET. IT WILL SCARE YOU TO DEATH AND ADD TO YOUR STRESS LEVEL. It may not even apply to your particular situation. The are varying degrees of CVID Some are worse than others. And, no, you do not have to live in a bubble. My daughter goes to school every day and participates in many activities. LEAD A NORMAL FULFILLED LIFE. Just be smart, as you would anyway. Don’t go around anyone that you know is sick. I do keep my daughter out of hospitals, nursing homes, etc. She also uses a lot of hand sanitizer. Other than that, she lives. It’s me at times that tends to be paranoid. It you would like to chat, I would be more than happy to talk. You can reach me at my posted e-mail address

    Karen White
    Mechanicsville, Virginia

    Reply
  • 2. Carol Carlsen  |  January 15, 2008 at 7:31 pm

    Karen,

    I am from No Va and now live in SD. My story is long, so suffice it to say that I was diagnosed a few months ago at 50 years old. I am a Nurse Practitioner and new little about this condition and I am well read and deal with HIV patients almost daily. I am going through the whole list of emotions and your email in particular, spoke to me. I hope your daughter is doing well and just yesterday we brought my 29 year old daughter for the blood work to determine if she has it or not. I could not find your email on this post and mine is carolcarlsen@msn.com shouuld it not get listed. I would love to hear from you or anyone on this site.
    Carol

    Reply

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