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mr.hippo

Updated 11mo ago

Looking to Connect with Others with a Rare Medical Condition

ive never met anybody with this condition before and i just thought it would be cool to meet some :)

Can you help? Connect today

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Hermione

2y

Hey(: I’ve never met someone with this condition as well. I’m “glad” to see that I’m not alone in this.
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Wonderland

2y

I've had cvid since birth. So I am diagnosed now, having been diagnosed at 13 for over 25+ years.
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Wonderland

2y

Great. I have had it for a long time. It seems to be more prevalent in diagnosis these days.
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Florina

2y

I’ve never met anyone with this either! Hi! This is a new diagnosis for me but my doctor agrees that it explains A LOT. The massive amounts of infections, the antibiotics that didn’t help, etc. I was a premie and needed help breathing. So we think it was due to being born so early
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Sexycop

2y

It is generally an inherited trait, I went on 123+me and sent in DNA to see if any relatives had it. And I found the link.
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Dandi

2y

In all the research that I have done, most say that it's not an inherited, genetic issue. I have found the same as you, that it is genetic in nature. I was always the child that caught everything that everyone else had and it always took me three times longer to recover. Most all my issues are respiratory, which is not unusual. As a rule, most patients who have CVID will go undiagnosed for many years and are told they have a fragile or weak constitution. I was a nurse for 28 yrs and traveled extensively. I was exposed to many things, but it took the stress of losing my husband to trigger the total failure of my immune system. Stress is a major factor in this disorder. It's the enemy that most illnesses are triggered by. There is no cure, but diet, exercise and a calm mind can help tremendously. Those are my priorities. I've had fewer illnesses than most do and I am diligent.
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Sexycop

2y

I agree. I know that I have had this all my life, and probably my mom, and probably someone in her family. I wasn’t diagnosed until I was 47. I think of all the doctors and all the diagnoses I got, and finally my GP saw something in my bloodwork for my insurance. Right before we were having a hurricane I started my infusions! Lort have mercy!

The content in this post is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.

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