This blog post is part of IDF’s Stories Project, designed to provide a venue for those living with PI to share their experiences. Some are first-person accounts, others are written by IDF staff. If you have a story you’d like to share, email us at firstname.lastname@example.org.
Ayden Fleming is 6 feet tall, weighs 180 pounds, and by all accounts, looks healthy. But his appearance belies his weakened immune system – Ayden has common variable immune deficiency, and while he has periods of good health, he struggles with infections and fatigue.
“I was in and out of hospitals throughout school. It seemed like every year something new would show up, like one year it’s bronchitis and then another year it’s sinus infections over and over,” said Ayden, 19. “A lot of times, I would get infections from viruses that only had numbers, that didn’t even have a name.”
The infections made sense to him considering his low antibody levels, but the tiredness frustrated Ayden and left him feeling isolated. In eighth grade, he attended school for half days.
“I was so exhausted, and physically I couldn’t do the whole day,” said Ayden. “When I missed all of those days, my friends said, ‘We have a seat for you we call the invisible man seat because you’re not there.’”
In his junior year, Ayden delved further into CVID when he made his diagnosis the subject of his AP Capstone Diploma. The AP Capstone is a special two-year seminar and research program that awards students an additional diploma designed to help them stand out in the college application process.
For his research paper entitled “Quality of Life of Adolescents with CVID,” Ayden surveyed 40 persons with CVID ages 13 to 23 and about the same number of young people without CVID. He assessed physical function, anxiety, depression, fatigue, sleep disturbance, pain interference, and pain intensity – determined to discover if others with CVID experienced similar challenges. He found out that, in fact, they did. Fatigue topped the list.
“It validated what I was going through for myself, so it felt really good to see I’m not crazy, this isn’t just something in my head I’m making up – no, I actually have this,” said Ayden, who was diagnosed with CVID at age four by Dr. Kathleen Sullivan, Chief of the Division of Allergy and Immunology at Children’s Healthcare of Philadelphia.
“One thing I always kind of struggled with as far as fatigue and everything else with the disease is that it’s not anything you can see. Dr. Sullivan told me that I don’t look like someone with CVID… I don’t fit the model of it, so she would always tell me you’re abnormal with the way you look - we don’t see it every day. As much as that’s good to hear, it made it more difficult. But doing the survey, it really validated what I had going on.”
Now, Ayden is teaming up with Dr. Sullivan to conduct another study. This time, the purpose is to determine what types of graphs are most effective at relaying data to adolescents and young adults. Inspired by Dr. Sullivan to conduct research for his first study, Ayden is thrilled that she invited him to assist with this study, which she designed.
“I’d praise Dr. Sullivan all day if I could. She’s been the best doctor I’ve ever had in terms of support and really working with me and doing everything she could for me,” said Ayden.
A sophomore at College of the Holy Cross, Ayden is a biology and chemistry double major on a pre-med track. His goal is to become an immunologist, and he urges others with CVID to pursue what they love best in life.
“With CVID, you have to understand that this disease isn’t going to go away, so you have to learn how to live with it and accept that what you have is pretty much permanent. But even though you have this, you can still move on with life and do almost everything anybody else can do,” said Ayden.
“There will be people who will try and stop you from doing those things, but as long as you know your limits, you can do anything.”
If you are between the ages of 10 and 30 and would like to complete the survey on which graphs are most effective in relaying data, click here.