I do not frequently talk about my Common Variable Immune Deficiency just because it has been such a “lifelong” problem and something I’ve just come to terms with having to live with – I had my first “near-death” infection at age 2 months. Common Variable Immune Deficiency, or “CVID” (hypogammaglobulanaemia / hypogammaglobulanemia) is one of many “Primary” Immune Deficiencies. Something like HIV is a SECONDARY immune deficiency (meaning that it was not a congenital “issue” and that it was somehow acquired from an “external” source). I hope that distinction is clear (if not, please do not hesitate to contact me / write a comment and I will elaborate further!).
Common Variable Immune Deficiency, or CVID, is, again, a primary immune deficiency. As the name implies, it is one of the most common (if not most common) primary immune deficiencies. It is also “common” insofar as most individuals that have CVID have low counts of “common” types of immunoglobulins (namely, IgG and IgA – defining the different types of immunoglobulins merits its own post, but basically those two “classes” of immunoglobulins make up the VAST majority of your “immune system.”). Basically, someone who suffers from CVID does not inherently produce ENOUGH antibodies to fight off infections – especially URI and LRI (upper and lower respiratory infections),
Without “help” from things like IVIG (IV Immunoglobulin) or SCIG (Sub-Cutaneous Immunoglobulin), our immune systems do not fight off infections and therefore “routine” infections like sinus infections and strep and various viruses can be very literally fatal. *Note: both IVIG and SCIG help to build up the IgG in one’s system, but as of now, we do not have a way to “increase” the level of IgA a person produces – the reason why someone who has something like Selective IgA Deficiency is in a really bad place because treatment with any sort of immunoglobulin can actually be incredibly dangerous to that individual and potentially deadly. Again, more information than I can write up “succinctly” here.*
At any rate, with CVID, upper and lower respiratory infections are INCREDIBLY common and often difficult to treat and/or resistant to treatment. It is a scary condition to have – when I have been “good” and I do my SCIG infusions every week, my immune system “peaks” out at the very “low” end of what is considered “normal;” without treatment, my immune system is pretty much … not helpful. I spent most of my childhood VERY ill with illnesses of all kinds (LOTS of strep, both strep throat and systemic strep which I believe TRIGGERED my Behcet’s – again, for another post).
In addition to being susceptible to URI and LRI, those of us with CVID (and other immune deficiencies) are susceptible to all kinds of infections – for short examples, I had Scarlet Fever 2x before the age of 17; I caught C. Diff in my early 20s; I have had COUNTLESS episodes of cellulitis, and every little cut or scrape becomes infected. I have had COUNTLESS UTIs as well as bladder and kidney infections, etc., etc. If a body lacks sufficient IgG and IgA, one simply cannot fight off these infections. (Another “side note” – IgG is the “main” component of the immune system and IgA is the immunoglobulin associated with the gastrointestinal tract – and I’m sure you have all heard that how much of our immune systems “reside” in our GI tracts!). In short, having a primary immune deficiency (CVID in my case), makes something like a “pandemic” of COVID-19 ” REALLY SCARY.
What I want to mention here briefly is that now that the number of cases is growing and growing and governors are shutting down all non-essential businesses, &c., (at least hypothetically …) people are starting to panic and UNDERSTAND what it means to feel TERRIFIED that a virus can very easily KILL YOU. I bring this up because since the age of 2 months I have had to live the way people are really “living” now – wearing face masks and disposable gloves; carrying pocket Lysol and Purell everywhere ALL THE TIME; having to change into “inside” clothes as soon as I get home; being unable to wear my hair down; having to cover most of my skin up in order for a SHOT at not getting ill (even doing all of the above, I did have a flu strain earlier this year and I have caught NUMEROUS very severe infections taking every possible precaution).
*Note: As of Wednesday, 18 March, the state in which I live, Pennsylvania, has 133 “confirmed” cases … and the first death in the state which was a case in the area in which I live.*
With all of that said, what I really want people to understand and to get “out of this” horrible situation is the AWARENESS and KNOWLEDGE that people like me MUST live like this every time we go outside of our “homes.” I once caught bronchitis that hospitalized me from a kid who was coughing ACROSS A LECTURE HALL. I spent a long time (a year at the least) in my childhood fighting through “chronic bronchitis and pneumonia” and the threat of a highly contagious LRI is not only terrifying to me, but reminds me of how incredibly PAINFUL and scary that kind of infection can cause (and that’s being fortunate enough to live through the experience). The number and types of infections I have had (and I’m not that old …) would probably shock even most doctors. But this is how I live. I KNOW that if I happen to get a particularly nasty cold or a flu strain that isn’t vaccine-covered (and sometimes even one that is!) that I have to monitor myself VERY CLOSELY and seek medical treatment IMMEDIATELY because even these kinds of “minor” infections CAN kill me. I could never accurately attempt to enumerate the times I have stared death squarely in the eye with fevers reaching 105+ with illnesses that would last for months and months and with infections that would be completely “resistant” to any treatment I was given. Even with potent antibiotic treatment (with bacterial infections like the aforementioned seemingly infinite number of strep infections) my body has suffered to fight the infections it has managed to fight off – for me, it has always lasted at least 3 months. For now, the SCIG weekly treatments have really been my best “defense” against pathogens, but, as I mentioned above, I have already had a flu once this year – and that was doing EVERYTHING “right.”
So yes. With that very rudimentary explanation laid out, I can say that most of the world now has a very basic idea of how I must live MY life EVERY DAY. It is not easy and it is not fun and it is more often than not absolutely terrifying.
AND WITH ALL OF THAT SAID, I will also say that despite being so prone to infections (and the public now facing that kind of situation as well), one has to live his or her life! When I say that, I do not mean “do not take the recommended precautions!” – for me, that would inevitably lead to my demise and in the case of so many people around the world now and in the weeks (and potentially longer) to come, it is INCREDIBLY dangerous not to be as “careful” and diligent as possible. What I am ultimately driving at is that there are many of us who live with the very real possibility a some random virus or bacterial infection (especially with increasing antibiotic resistance) CAN, very easily, kill us. And, again, that is with FULL PRECAUTIONARY ACTION AND TREATMENT.
I hate to say I’m happy the world knows what it’s like, albeit to a very small extent, but I just really pray and hope that the world CAN START TO EMPATHIZE WITH THOSE OF US WHO MUST LIVE THIS WAY ALL THE TIME. I CAN ONLY PRAY THIS BRINGS SOME AWARENESS TO PRIMARY IMMUNE DEFICIENCIES (AND SECONDARY IMMUNE DEFICIENCIES – ALTHOUGH THEY ARE ALREADY GIVEN QUITE A BIT OF AWARENESS, AT LEAST IN PART) AND HOW SCARY IT IS JUST TO LIVE YOUR LIFE IN A WORLD WHERE PEOPLE FREQUENTLY DO NOT ACT “RESPONSIBLY.” Before this COVID-19 started to go “nutsy,” I heard a couple of idiotic “millennial-types” saying “like, well literally if I get sick, I get sick. So what if I spend a few days in the hospital?” Like literally? We just had our first death – and to MY knowledge (as “personal information is not being released), this person was an otherwise “healthy” adult.
And with that, I will leave you for tonight! I hope you are all staying healthy and being responsible and taking the proper precautions and doing great things! Since this “pandemic” started to spread more rapidly, I have come to (re)iterate that it’s STUPID for any public health organization such as the CDC, etc., to tell people NOT to wear masks unless they are sick. IF YOU ARE SICK, STAY THE HELL HOME AND IF YOU ARE REALLY SICK, GET MEDICAL ASSISTANCE ASAP! But for the rest of us, even for those of you who have “good” immune systems and perhaps even slightly “immunocompromised” immune systems, I say there is no harm in wearing a mask – YOU CANNOT EXPECT OTHER PEOPLE TO BE RESPONSIBLE; THE ONLY “CONTROL” YOU HAVE OVER ANY OF THIS IS BEING RESPONSIBLE YOURSELF!
I hope to be back soon soon soon! Thanks much again for taking the time to read this and – as always! – if you would like to share your story or if you have any information to add or you would just like to comment, please do so! I really would love to hear from you! Thanks much and remember, MY HEART IS ALWAYS WITH YOU….
❤ Always, Beth