On July 4th, 2016, I embarked on a journey that would take an entire year to complete. I wanted to show what goes into managing Gavin’s immunodeficiency for one full year. I wanted to show everything that Gavin has to go through, simply to keep from getting seriously ill.
After discussing this with Gavin, he liked the idea and together, we began preparing for this post, one infusion at a time.
What is Common Variable Immunodeficiency?
Before we get into this, let’s first explain what Common Variable Immunodeficiency is, and how it impacts Gavin’s life.
The below information is courtesy of the NIH
Common variable immune deficiency (CVID) is a disorder that impairs the immune system. People with CVID are highly susceptible to infection from foreign invaders such as bacteria, or more rarely, viruses and often develop recurrent infections, particularly in the , , and . Pneumonia is common in people with CVID. Over time, recurrent infections can lead to chronic lung disease. Affected individuals may also experience infection or inflammation of the , which can cause diarrhea and weight loss. Abnormal accumulation of immune cells causes enlarged (lymphadenopathy) or an enlarged spleen (splenomegaly) in some people with CVID. Immune cells can accumulate in other organs, forming small lumps called granulomas.
Approximately 25 percent of people with CVID have an autoimmune disorder, which occurs when the immune system malfunctions and attacks the body’s tissues and organs. The blood cells are most frequently affected by autoimmune attacks in CVID; the most commonly occurring autoimmune disorders are immune thrombocytopenia purpura, which is an abnormal bleeding disorder caused by a decrease in cell fragments involved in blood clotting called platelets, and autoimmune hemolytic anemia, which results in premature destruction of . Other autoimmune disorders such as rheumatoid arthritiscan occur. Individuals with CVID also have a greater than normal risk of developing certain types of cancer, including a cancer of immune system cells called and less frequently, stomach (gastric) cancer.
People with CVID may start experiencing signs and symptoms of the disorder anytime between childhood and adulthood; most people with CVID are diagnosed in their twenties or thirties. The life expectancy of individuals with CVID varies depending on the severity and frequency of illnesses they experience. Most people with CVID live into adulthood.
There are many different types of CVID that are distinguished by genetic cause. People with the same type of CVID may have varying signs and symptoms.
As far as we know, Gavin doesn’t suffer from any form of autoimmune disorder. He’s undergone extensive genetic testing, participated in a major study at the Cleveland Clinic, and yet the cause of his condition remains unknown.
Regardless of the cause, the treatment is IVIG infusion therapy. Without going into the complex mechanics of this process on an immunoglobular level, let me explain it like this.