Friday, December 17, 2010

CVID Symptom Questionnaire

Well it sucks I even thought to do this.  But I did.  CVID is called variable for a very good reason.  This disease varies WIDELY among people.  Response to Ig varies widely.  For me, it was a miracle.  I say that but even though I almost never get sick anymore, here I sit on disability, waiting to go to National Jewish Hospital to see if I have a lung disease caused by...you guessed it! CVID!  Ok, no digressing here lol.  I am on an amazing online support group on Daily Strength for people with CVID.  We talk.  Boy do we talk.  About everything under the sun, including our symptoms.  Symptoms no doctor ever mentioned that we would have.  Then, we started seeing a trend.  I thought how awesome would it be to track this stuff.  Guess what?  So far 100% of people, WHO RESPONDED TO THIS QUESTIONNAIRE, have asthma. About 50% have below normal temperature.  Very cool stuff.  Ever heard of hydradenitis superativa?  We have.  ITP? Common pre-cursor to CVID.  So, in an effort to keep the form alive and the responses easy to find and not to get lost in threads on a support group...I am putting it here.  WARNING:  IT WILL NOT LOOK PRETTY.  Due to the layout of my blog it probably will look all off.  But I don't care and you shouldn't either lol.  Here it is and the response summary link will be below that:


Now the responses:

http://spreadsheets.google.com/viewanalytics?formkey=dHZVUkctM2NxNFllZFZtMF93RE9wX3c6MQ

PLEASE feel free to comment or even join our support group at:

http://www.dailystrength.org/c/Common-Variable-Immunodeficiency/support-group

4 comments:

  1. What is a CVID Symptoms? is it connect to metal health problem?

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  2. No it is not. CVID - Common Variable Immunodeficiency is a genetic immune disease. The best way I can describe it is that it is one step away from being a bubble boy. Hope that helps :)

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  3. gosh I hope I dont have this, it sounds a lot like me. Sinus infections, skin infections, always catching viruses...and ugh painful menstrual. Had no idea that was part of it. Taking this info to my doctor pronto! Thanks

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  4. Think 10-20 infections per year. Like bronchitis AND ear infections AND sinus infections..all at once, every month. Not getting strep until you are 35 and then getting it 7 times in one year. Then have your doc test your IgG levels and if they are low you need a pneumo/tetanus/DTP test and see if you react. Good luck :)

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