Michelle Searle was 11 years old when she was diagnosed with common variable immunodeficiency disease, a chronic disorder where the body doesn’t make enough antibodies to fight off infections. As a result, Michelle doesn’t have much of an immune system. Because she was constantly sick growing up, she was sent to a doctor who studied immunology at the University of Miami. Her doctor diagnosed her within seven to eight months.
“I would get a fever once a month, and I would have to be on one, two and three antibiotics to try to keep it down,” Michelle said. “I never had pneumonia; I had bronchitis, and I had a couple of sinus infections growing up. I was so lucky because my pediatrician was the best.”
Doctors have a hard time diagnosing the “think zebra” disease. Doctors and patients who are aware of the disease call it this because it’s hard to diagnose. The Immune Deficiency Foundation explains that, while in school, doctors are trained to follow the expression, “When you hear hoofbeats, think horse, not zebra.”
“It’s definitely made me more aware of not just her disease but with issues in general,” said Mandy Searle, Michelle’s older sister. “I’m always talking about it with people and wearing the walk t-shirt.”
Today, many adults are being tested and discovering that they have CVID.
“This is really bad because the deficiency damages your body from being sick for a long time — your lungs especially, because you can get other diseases and other disorders,” Michelle said.
Michelle said FGCU’s Student Health Services didn’t know what CVID was.
“I told them what I had,” Michelle said. “They tried searching it, and it wasn’t in their system. So, I had to explain what it was. A lot of times you have to explain to a hospital what it is. (Doctors) say that, in medical school, they briefly learn CVID. When I went to the (Student Health Services), I told them what antibodies to give me because I just knew.”
Michelle needs medicine and antibodies donated from other people in order for her body to stay healthy. She gets an infusion in her thighs or stomach every other week.
“It’s two needles, and it’s for about two hours,” Michelle said. “It’s easier to deal with now because my treatment plan is more flexible. And, I get less side effects from it, so I don’t miss as much school as (I did when) I was younger. Now, I get sick probably as often as a normal person does.”
Sometimes, the medicine she takes causes her to get migraines and miss school.
Michelle supports and depends on her other friends who have the same immunodeficiency disease.
“I let myself cry and have a bad day because the next day, I know I’ll wake up fine and feeling better,” Michelle said.
The Immune Deficiency Foundation is an organization that brings together people who are diagnosed with CVID. When Michelle was diagnosed, her doctor connected her with an IDF group.
“They have a national conference every two years,” Michelle said. “They have kids between different ages, and I hung out with kids my age. I love the foundation. It’s the best thing ever, and now, I am involved and a teen council member. So, we work with the teenagers by teen escapes, which are retreats.”
In 2014, IDF started organizing walks for people who battle CVID. Walks were located in places such as Boston, New York, Houston, Cleveland and Philadelphia. Michelle said IDF extends the walk each year. If the walk is not in your town, IDF includes a virtual walk option for people who can’t physically be there.
An IDF walk is what prompted Michelle to tell people about her disease.
“I never really told people about my disease, but when the walk came around, I told a lot of my friends about it. The walk was awesome because it gave me the opportunity to explain to people what I have,” Michelle said. “It was like a weight getting off my chest. I’d rather have everyone know, but it’s just random to bring up. So, it’s like you kind of need a reason to, and that was a reason. The support I got from the walk was emotional. I didn’t think I would have that much support.”
There are a large number of people who don’t know what CVID is. In fact, Michelle said many people confuse it with Acquired Immunodeficiency Syndrome.
“A lot of times people only know AIDS when they hear an immune system (disorder),” Michelle said. “So, a lot of times, I have to tell them ahead of time that it is not AIDS.”
CVID is not even related to AIDS; it’s genetic. Symptoms include fever, migraines, dizziness, coldness, pneumonia, sinus infections, recurrent infections and fatigue.
“I eat healthier now and go to the gym,” Michelle said. “And, I need sleep because, if I don’t get enough sleep, I get sick. I remember, freshman year, I wouldn’t go to sleep till 6 a.m., and I would get sick for a week.”
For Michelle, balancing both a healthy and crazy lifestyle is what helps her cope with problems.
“She really takes care of herself and keeps on top of things, and a lot of kids her age would not take care,” Idie Searle, Michelle’s mother said.
Michelle likes to be outside when she’s sick.
“The world goes on no matter what happens in life,” Michelle said. “The trees are still going to blow; the cars are still going to go; the sun is still going to come up. So, it helps me when I’m outside, and I see that people are so little if you look at the whole big picture. My outlook on life is not that I have to go to school, but I can go to school because there are so many people who can’t because of the severity of their disease. I am able to do that, so I am grateful.”
Michelle, an elementary education major, says having this disease will help her understand her students in the future who may be struggling emotionally with problems.