My story

Growing up, my mom was always sick. She muscled through most days but you could see the toll it took on her. When I was in my late teens and early 20s she was hospitalized multiple times because her lungs kept filling up with fluid. She saw doctor after doctor with no success. No one could figure out what was wrong with her. At one point, she had us kids write down what pieces of furniture and jewelry we wanted because she was convinced she was going to die soon. She suffered for a couple more years until she finally met a doctor who changed her life. This doctor really listened to my mom, did research and was able to give her hope. She was diagnosed with Hypogammaglobinemia (a form of CVID). Back then (1980’s) not much was known about immunodeficiency. The doctor let my mom know it was hereditary and that all the kids should be tested. My sisters and I were all tested and that is where my story starts….growing up I was always sick. Sinus infections, ear infections, strep throat…you name it..I got it. And it always took longer than others to recover. So I was actually glad to have a diagnosis that explained why . As I have gotten older, it has gotten increasingly worse. I get fatigued easily. A simple sinus infection which used to last for days can knock me out for weeks. Every time I get Bronchitis I am fearful it will turn into pneumonia. I have exhausted many of the antibiotics and have become allergic to several of them. In addition to CVID, I have hypothyroidism, Vitiligo, scarring on my lungs from all the infections and recently diagnosed with Chediak higashi syndrome. It is very frustrating to try to explain to people how CVID affects you. Those days when you struggle to get up….why a simple sinus infection to others is not so simple in your case.
Soon I will be starting immunoglobulin iv treatment. My mom started IV treatment in the 90’s when she was about the age I am now. She is now 89 and doing fairly well…..so I have hope!

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