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Tom’s CVID Journey

by Linda Harvan, FAUSA

Many people around the world are struggling with the decision about whether to receive one of the currently available COVID-19 vaccines. For my family, the decision is easy. If most people are like horses, my husband is a zebra: he has a primary immune deficiency, specifically Common Variable Immune Deficiency or CVID.

The Immune Deficiency Foundation defines primary immunodeficiencies (PI) as “a group of more than 400 rare, chronic disorders in which part of the body’s immune system is missing or functions improperly.” Patients with PI are at a higher risk of having “severe, persistent, unusual, and/or recurrent infections.” It is estimated that 70–90% of people with PI are undiagnosed worldwide.

CVID is common: it is found in about one out of every 25,000 people and in 20% of patients diagnosed with a primary immunodeficiency. CVID is variable: all patients have a decrease in at least two out of the three major types of immunoglobins (IgG, IgA, and IgM), although the degree and type of deficiency varies from patient to patient. 

In the United States, the month of April is used to spread awareness of PI, and the international community recognizes April 22–29 as World PI Week. To learn more and to support those living with PI, like World PI Week on Facebook, follow them on Twitter (@WorldPIWeek), and see what happened around the world for World PI Week on their website. Together we can raise awareness of primary immunodeficiency and promote early diagnosis and availability and access to treatment and care worldwide. The campaign for World PI Week offers two short videos featuring PI patients and their families from around the world and all walks of life: Stories of patients and parents of children living with primary immunodeficiency and Patients and parents of children with PI talk about the mental health and emotional impact of living with primary immunodeficiency.

Over the next year, I will introduce you to my husband and explain more about the symptoms, diagnosis, and treatment of CVID along with the special needs of PI patients and the support available. If you have any questions in the course of the series, please email me care of the Health Team at  . I will do my best to answer your questions during the appropriate segment. 

 

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