CVID Introduction

Introduction: Primary Immune Deficiencies

“The Bubble Boy”

What’s it like to live in a bubble? For some, this means living a sheltered life. But David Vetter, a young boy from Texas, lived out in the real world – in a plastic bubble. Nicknamed “Bubble Boy,” David was born in 1971 with Severe Combined Immunodeficiency (SCID), and was forced to live in a specially constructed sterile plastic bubble from birth until he died at age 12.

David had Severe Combined Immune Deficiency (SCID). SCID is another form of a Primary Immunodeficiency, the most severe form. It has taken almost 40 years, but with the help of the various entities, many states are now screening for SCIDs in newborns. My state, Missouri does not. If a baby can be identified early with SCIDs the chances of survival increase. If not, the baby will die.

This blog will mention other Primary Immunodeficiencies (PI), and address Common Variable Immune Deficiency (CVID). I will refer to Common Variable Immune Deficiency as CVID throughout my blog.

The key point is PIs, are an Invisible Illness…for the most part. However, Many more millions suffer with Invisible Illnesses ranging from Chrones, IBS, Depression, Lupos, Fibromyalgia and more. LONG Before my initial diagnosis with a PI, I have suffered my entire life with Invisible Illnesses. I still do. Topics here are not inclusive to PIs, but to Invisible Illnesses in general.

If a reader can identify with any of my symptoms, or what is posted, they may have a varied degree of a PI, as no two people have the exact same cluster of symptoms, autoimmune diseases, or other illnesses related to CVID. Hence, VARIABLE in the CVID diagnosis. Additionally, there are several other formal diagnosis that are related to a Primary Immunodeficiency.

CVID can be identified as an enormous amount of medical mambo-jumbo. I will include the scientific aspect, studies, my personal experiences, diagnostic criteria, treatment, and the co morbidities, and probably more, as the blog progresses.

I have heard some refer to CVID as an “immune system in chaos”—basically it’s just that. What many do not understand is that our immune systems dictates every single action of our organs, which in turn, effects ones health, in a serious way.

Sometimes people think “HIV” when they hear a term like “Primary Immunodeficiency”…… There are several differences, HIV is “acquired”, HIV is communicable, HIV has a LOT of press, HIV has a LOT of research, and a LOT of options for treatment, many people understand the simple acronym HIV.

Now, PI? CVID? SCID? Who has heard of these terms? I hold a MS in Psychology, a BA in Education. I  never heard of these acronyms, nor, and I admit, did I care. Now, if I were to have heard HIV, bet my last dollar, I would have immediately identified with what the condition was.

Primary Immune deficiencies aka PIs, are PRIMARY, meaning the patient is born with an out of whack immune system. PIs are not contagious (but are genetic), PIs don’t have ANY press—although “House” aired an episode (Season 1, Episode 17) addressing a highly theatrical portrayal of CVID.  Treatment options are minimal and are invasive. There is no cure for PIs.

What my blog talks about is CVID. Although, it’s not Common, as the name suggests, it’s the most identified and is basically an umbrella diagnosis for those who meet the diagnostic criteria, set by the wonderful (hmm) insurance companies. Variability means each individual’s symptoms and subsequent illnesses are different, Immune deficient– the immune system is not working the way it should.

Why does the reader care? Well, I KNOW that many more people would be diagnosed IF this diagnosis wasn’t sealed up in the janitors closet at every medical school in the country. The symptoms are out right obvious. It’s appalling how the medical field dismisses so many patients, and does not refer them out for ONE blood test, that WILL make the diagnosis firm.

Knowledge is POWER. The easiest (if there is such a way to describe Primary Immunodeficiency aka PIs), is by using the example of “The Bubble Boy”.  I dislike posting media that does not really portray the patient in reality, as in the Made for Media Film, believe me, not a person rides off into the sunset perfectly healthy and content, as J. Travolta did. However, it seems the public can relate to that film, and it doesn’t help the connection on such a complex diagnosis. Davids legacy has pioneered and progressed research, after he lost his battle to SCIDS. Both media presentations are here.

What do you think?