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 a form of a Primary Immunodeficiency. If a baby can be identified early with SCID the chances of survival increase. If not, the baby will die. It has taken almost 40 years, now many states are screening for SCIDs in newborns.
This blog will talk about Primary Immunodeficiency (PI), Common Variable Immune Deficiency (CVID), rare disease and invisible illness. I will refer to Common Variable Immune Deficiency as CVID throughout. If a reader can identify with any of my symptoms. Or what is posted, they may have a varied degree of a PI. No two people have the exact same cluster of symptoms, autoimmune diseases, or other illnesses related to CVID. Hence, VARIABLE in the CVID diagnosis. Although, COMMON, it is not. Specific criteria is used to establish a diagnosis of a PI, or CVID. It is literally as simple as a blood test. Read on throughout this blog about my personal experience, diagnosis, triumphs, obstacles, mental and emotional states of living with a rare and invisible genetic curse -or- not.
There are also several other formal diagnosis (and many still unknown) that are a form of 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 comorbidity, 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 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.
A Primary Immunodeficiency aka PI, 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, basically “Invisible Illnesses”. Although, it’s not Common, as the name suggests, it’s the most identified PI. CVID is basically an umbrella diagnosis for those who meet the diagnostic criteria, set by the wonderful (um…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), is by using the example of “The Bubble Boy”. David was born with Severe Combined Immunodeficiency Disorder (SCID), another form, and lethal, but treatable if detected shortly after birth, of a PI.
****Five years after writing this introductory piece, I have gained more wisdom, and life-experience with living with a PI. I was a bit embarrassed when I re-read this post much later (UGh…I tried, I wrote this originally 6 months after diagnosis, and was overwhelmed). I hope you follow along with the many roads that began, diverged, ended, and new and unknown patterns developed throughout the course of living with an invisible illness. Promise, there are thorough posts on CVID, and other autoimmune illnesses that I have experienced. View my challenges, learn from my mistakes, support one another. 1/29/2019