Mystery Diagnosis PIDD Part 2 of 2

Mystery Diagnosis about a specific type of Primary Immunodeficiency Disease (PIDD) called Common Variable Immunodeficiency Disease (CVID)

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People & Blogs

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• Mystery Diagnosis
• PIDD
• CVID

[Fyrato]

Sometimes it's hard to tell which is a symptom and which is an illness. Especially with rare diseases. If you were a doctor and saw a few purple bruises on a boys leg, you want to think that it's just from a fall, and not immediately leukemia. I guess that's why it's so hard for these individuals to find a proper diagnosis.

[florry61]

-and healthy! Thanks to a wise Immunologist. I'm 1 of 100 with PIDD, living in Norway, but didn't get the diagnosis until 2 years ago, when I was 47. If my former family MD had understood the phrase:'to be a lumper, and not a splitter', I would have been healthy now. All the infections, stomach problems in my life has cost me a lot of problems; as some few PIDD pat. get: Chronic fatigue, despite adequate treatment, the same as Isaac gets. Thanks A LOT for sharing Isaac, mam/dad, MDs!

[ChristionGirl45]

I understand what this little boy went through I've been in and out of doctor's office's for diffrents resin's since I was about six months old and trust me you get miss diegnost you get told your faking and all that stuff but the thing is you don't stop until somebody listen's and if you have to go to a 150 doctor's before one will listen then so be it but never give up if you know something's wrong then you keep pushing until someone is ready to listen<3

[bandgeekalways]

If it's rare...then why does it have "common" in it's name??? =/

[leapingraincloud]

I smiled when his dad started crying tears of joy.

I always do that.

Say if my friend won a contest and she started crying tears of joy.

I would laugh or smile or cry along with her o_o.

..wth...

[GThureka]

the doctor who did the blood test is so busted because he never did part 2 of the blood test.

[rydag11]

@SzeChengg Made me cry too

[deb310red]

A good doctor listens to their patients. He/She doesn't assume that their patient is "making things up" or "over-reacting" to symptoms. That's why it often takes so damn long to get a diagnosis: because a patient's time is wasted by some arrogant know-it-all doctor who refuses to follow the Hippocratic Oath.

[FightingforAutumn]

My little girl has been sick since she was born. She will be 4 on Sunday and has had over 50+ lung infection, over 25 ear infection, and over 30 hospital stays. We were finally diagnosed 2weeks ago with PIDD/CVID we started IVIG last Thursday and will start Sub-Q treatments at home with GammaGaurd with an in home nurse weekly. We are so thankful to finally know what is wrong with her.

[MamaFox79]

My mother was sent to heatologists, infectious disease specialist, among others and was not referred to an immunologist until later. There are many doctors who don't even know what CVID is. Make people aware!

[MamaFox79]

For those who don't know it is a hard thing to live with. My niece my niece has been home schooled because of all the doctors appointments and she has been having IVIG for 2 years and is very sanitary. Even when treatment is received there can still be ongoing problems.

[MamaFox79]

More people need to know about CVID. I believe there are more people who have it than 1 in 25,000-50,000. I am doing a report on it for school and everywhere i look people are misdiagnosed for years. My aunt died of it at age 19. My mother died from it (pneumonia) at age 43. My sister was diagnosed at age 35 and her daughter at age 10. They might not have been diagnosed either but because of the history, my sister knew what to ask and look for.