Among the CVID patient community and advocacy organizations, many agree that a lack of awareness prolongs CVID diagnosis. In 2017 I found out that I was born with Common Variable Immunodeficiency. CVID is a genetic Immune system disorder in which there are low levels of antibodies to fight off infections. The “variable” in its name …
Every year on the last day of February is Rare Disease Day®. This holiday does not feature an elf that sits on a shelf or a jolly man in a red suit. Instead, the National Organization of Rare Diseases (NORD) promotes Rare Disease Day® to raise awareness for over 7,000 rare diseases. The NORD mission …
Recently I learned that it takes 131 donations of healthy human plasma to make the amount of medicine I infuse in just one week! Imagine my further surprise when I found out it takes over a year to produce my life-saving medicine! You may have heard that plasma from recovered COVID-19 patients is an effective …