We found a rather concise explanation of CVID on Yoni Maisel’s blog. I’ve altered it just a bit, but he did the work:
What It Is:
Common Variable Immune Deficiency – A rare, genetically determined, immune-system disorder. The cause remains unknown.
Is it common:
No. Approximately 1 in every 50,000 individuals have the disease according to the National Institutes for Health.
What People With CVID Lack:
Life-saving and life-sustaining antibodies. Those with CVID simply do not produce them in sufficiently effective amounts or at all.
Living in Fear:
People with CVID fear pathogens of all types: bacteria, fungi, parasites, protozoals, and more. They realize that pathogens which might only affect others mildly have potentially life-threatening repercussions for them.
Conditions Associated With CVID:
There are numerous secondary auto-immune diseases and a highly-increased predisposition to various types of malignancies associated with CVID. Lymphoma, for instance, has an 11-fold increase in CVID – that’s 1100%. Those with CVID often have respiratory problems as well, such as severe, uncontrolled asthma.
Delay in Diagnosis:
According the the Immune Deficiency Foundation (IDF), there is an average delay in diagnosis of 12 years from the onset of symptoms, with nearly a quarter of patients experiencing a delay of over 20 years. This, unfortunately, represents a very protracted period of being ill with nobody knowing quite what is wrong, and can lead to permanent, irreversible damage. It usually takes a very perceptive and proactive physician or specialist to connect the dots and follow up with diagnostics.
What Keeps CVID Sufferers Alive:
Regular intravenous or subcutaneous infusions of immunoglobulin (antibodies).
How to Remain Healthy:
People with CVID depend upon antimicrobials: antibiotics, anti-fungals, anti-parasitics, etc. They tend to be on these agents quite often and for longer durations than our “normal” counterparts. (This can often lead to even more health issues.)
Who Figured This All Out?
Dr. (Colonel) Ogden Bruton (1908-2003) – pediatrician and Chief of Pediatrics at Walter Reed Army Hospital. Although he discovered the related PI disorder “agammaglobulinemia,” Dr. Bruton was the first researcher to uncover Primary Immunodeficiency Disorders.
The Face of Immunodeficiency
David Vetter, the Original “Bubble-Boy”. Although what David suffered from, Severe Combined Immunodeficiency, is somewhat different than CVID, David has become the everlasting face of Primary immune Deficiency.
Aside from suffering more frequent illnesses than the normal population, CVID patients probably don’t live much differently than most others… but with far more caution and awareness of risks and dangers to our immune-system health. When our immunoglobulin levels are high (post-infusion) we tend to be rather “normal.” When they are down, we tend to be fatigued and very susceptible to illnesses.
According to the Mayo Clinic, with proper treatment a 20-year survival rate is 64% for male patients and 67% for female patients.
Where Does The Future Lie:
Probably in adult stem-cell technology which has already made significant inroads in the treatment of the Primary Immunodeficiency Disorder Severe Combined Immunodeficiency (SCID).
thanks for putting this together
Hi there, thank you for this brilliant explanation. May I please reblog this?
Its nice to share this information. People dont understand what I go through. I stay as strong as I can but some days it is so so hard… when people find out I have CVID, they tend to be afraid of me as if they will catch it from being near me and when i try to explain CVID to people, they just get confused. You simplified it… i love it. Thank you.
Love love love the simplicity of this, it is so hard to explain, I have not yet been able to do this. Feel bad all the time & hide it well and push, it’s hard to explain how & why I’m ok one day & dying the next then ok again. Why do I just work, which is getting much harder to do, and go home? I thought that infusion makes you better, why do you get so much worse, you should stop, find a new doctor (I only have 6)! I’m going to attempt to share hoping it explains, also hoping it explains all the drastic changes as I had adult onset after neck surgery, allergic to metal, this killed what immune system completely! I had to cash in & sell every asset, take a less stressful job at half the income, all this in a year, talk about depression & anxiety which only added insult to injury but I’ve finally come to terms with it, others are the hard part.
Thank you very much
Thank you. I have CVID and I am also a RN, currently hospitalized another infection. No doctors understand except NP and family physician office who worked with this and found the diagnosis 2 years ago. Currently this hospitalization they seem better with it, but I have been trying to use my stage face ( the face I put on in public and work). Usually I only have the energy to work and sleep, people think depression and that is not the case seen doctor for that too. It’s all I can do to get though each day. Thank you for this information may be easier to share with healthcare professionals.
Thank you. I have CVID No doctors understand except NP and family physician office who worked with this and found the diagnosis 2 years ago I have been trying to use my stage face ( the face I put on in public and work). Usually I only have the energy to work and sleep, people think depression and that is not the case seen doctor for that too. It’s all I can do to get though each day. Thank you for this information may be easier to share with healthcare professionals.