Oh no! Where’s my bubble?

The movie Bubble Boy, starring Jake Gyllenhaal as a boy born without an immune system has caused the phrase, “No, I do not live in a bubble, I have never lived in a bubble.”, to become common among individuals with immune disorders.

I have an immune disorder called “Acquired Hypogammaglobulinemia”, more commonly referred to as CVID (Common Variable Immunodeficiency).  It is a disorder that affects the antibodies (IgG, IgA, IgM, and IgE) of one’s immune system.  And, unlike Jimmy Livingston, I live my daily life without a protective bubble.

Generally, when I say immune disorder the first thing most people think about is AIDS.  Yes, AIDS is an immune disorder.  It stands for Acquired Immune Deficiency Syndrome.  However, there are other immune deficiencies that exist, like CVID, that affect many people.

CVID is not contagious.  In fact, doctors and scientists are still trying to discover how a person develops CVID.  It is most common for adults to be diagnosed with CVID.  However, more and more cases of CVID in early childhood are being discovered.  I was diagnosed when I was nine years old.  Now, at twenty-two, it has become an accepted and manageable part of my life.

If you saw me on the street, you would not know I had a life-threatening illness.  Monthly treatments of IVIG (intravenous immunoglobulins) or weekly infusions of SCIG (subcutaneous immunoglobulins) greatly increase my vitality.  These each take several hours and are extremely exhausting.  The infusions combined with a healthy lifestyle can help to maintain a very normal life for a person with CVID.

So, for all my fellow primary immune deficient friends out there, you can make it work! And for all the rest of you–no, I do not live in a bubble!

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