Mom’s common variable immune deficiency diagnosis explains lifelong infections and fatigue

Susan Day, then 41, took her elementary school-aged son, Jace, to the allergist-immunologist for an appointment concerning his asthma, despite not feeling too well herself. As the doctor examined Jace, he also observed his mother’s symptoms – fatigue, sore throat, and fever.

“I looked like death in the corner, and I was there asking for help for my son who had asthma since birth,” said Day.

When Day told the doctor that she had taken antibiotics for a year and remained acutely sick, he ordered bloodwork and other tests. The results revealed Day had common variable immune deficiency (CVID), the most frequently diagnosed primary immunodeficiency (PI).

“The doctor recognized something was wrong, and I had been to 10 to 15 specialists for infections … and not one doctor suggested that they check my immunoglobulin (Ig) levels,” said Day, diagnosed in 2017. “I told him, ‘You just saved my life,’ and he continues to do so.”

The diagnosis explained Day’s lifelong experience of developing bacterial, fungal, and viral infections and coping with extreme tiredness, even as a youth.

“In school, I was captain of the dance team and editor of the newspaper and danced competitively on weekends, but I had to miss the Mondays of school because of being too exhausted,” said Day.

“My friends would make fun of me because I would say I have to go home and rest up. I can’t go out tonight, or I can’t go shopping. I have to take a nap and rest up and conserve my energy.”

The lethargy and infections continued into adulthood and interfered with Day’s career and her role as a mother.

“For a year, I couldn’t help my second grader get on the bus. I had worked at home for 10 years and literally could not get out of bed, and my sixth grader, Jackson, had gotten my second grader dressed and ready for school because my husband leaves at 6 a.m. for his job, and Jackson comes over to my bedside, and he said, ‘I know I’m 12 years old but I still I need you.’ I didn’t know what the problem was,” said Day.

The CVID diagnosis not only provided insight into Day’s poor health but also prompted the doctor to explore more deeply the health of her children.

“As soon as I was diagnosed, we recognized the symptoms in my kids,” said Day.

Jackson, now 18, received a diagnosis of CVID, and his younger brother Jace, 13, has IgG subclass deficiency. Day and her sons take prophylactic antibiotics, and Day also receives treatment through immunoglobulin infusions. While her sons miss one or more weeks of school each year due to illness (and have Individualized Education Plans), they don’t require infusions at this point, said Day.

“In college, Jackson will take medicine until he needs infusions, but it’s not a matter of if – it’s when,” said Day.

Immediately after diagnosis, Day, who holds a degree in journalism, researched PI and sought resources to help guide her family through this unfamiliar condition. Within months, she discovered the Immune Deficiency Foundation (IDF).

“Right away, I got involved,” said Day.

She requested assistance from IDF’s Peer Mentor program, attended IDF education and support group meetings, and served as an IDF plasma ambassador. She was also a social media patient advocate for CSL Plasma and served on the CSL Behring Patient Leadership Board.

Talking with others who have PI through the IDF Peer Mentor program helped normalize the condition, and volunteers unselfishly gave their time to educate and support Day. One of her mentors was a man diagnosed with PI as an adult.

“I realized there was no quick fix. This is forever, and he was great. He had PI, and his kids did not. He’s older than me, and he had a family and was a breadwinner and had had this happen to him late in life, and he had many more complications than me,” said Day.

“He was always so positive, and he was always a bright spot when I needed it. We still keep in touch.”

Buoyed by the nurturing of peer mentors, Day became one herself.

“I’ve utilized these resources myself, and then I felt ready a little bit toward the end of the pandemic to help others in the same way,” said Day.

Day currently leads the IDF Indiana Get Connected Group and is an IDF peer mentor. She’s mentored about five people, and when they don’t respond on the first contact, she reaches out to them again.

“I feel it’s important to give it a couple of shots,” said Day.

She lets the mentees guide the frequency and direction of the communication, whether through phone calls or email.

“I can talk to someone who wants to talk once a day or once a week. I can be reserved or an open book. That’s the way counseling and therapy are – it’s reflective. It helps you see better,” said Day.

“And when they say, ‘Thank you,’ I say, ‘You’re welcome,’ but also, ‘Thank you.’ For me, like they always say, you learn when you teach, and helping others helps you. I get so much more from it than they could ever possibly know.”

Day said her life is back into a productive rhythm.

“I love working – and advocating. There is a purpose. There are people hurting, and while we have come so far with being more open and arguably there is so much help out there, when a person is isolated and coping by themselves, it feels like there isn’t much,” said Day.

“For them to reach out to IDF, that’s a big step.”