Bloomfield Hills Schools Alum navigates illness as she follows her dreams

BLOOMFIELD HILLS — Elana McEwen, a Bloomfield Hills High School graduate, is celebrating her graduation from Michigan State University and the beginning of her career in Atlanta.

McEwen has overcome health obstacles throughout her entire life due to primary ciliary dyskinesia (PCD), which is a rare lung disease.

PCD is a genetic condition that can lead to chronic respiratory infections due to cilia, which are hairlike structures in the body that are not able to properly clear out mucus and bacteria.

“When Elana was born, her first sound wasn’t a cry, it was a cough, and then she had a wheeze. And she’s coughed and wheezed basically every day since she has been born,” her mom, Karen McEwen, said.

After she was born, Karen McEwen said that her daughter constantly had wheezing in her lungs. Her first hospitalization after birth was at 3 months old when she had her first case of pneumonia.

“The doctors just continuously tested her for a variety of things and could not find anything,” Karen McEwen said.

When she was 3 years old, the doctors said that Elana could have either a laryngeal cleft, which is a hole in the larynx, or primary ciliary dyskinesia.

Boston Children’s Hospital was considered the leader in finding and repairing laryngeal clefts, and after an appointment was set up, it was discovered that Elana did have a laryngeal cleft. At that time, the medical team said that this answered all of her symptoms and that once the larynx was surgically repaired, her symptoms would improve.

However, Karen McEwen said she had mother’s intuition and knew that there could be more to the issue than her laryngeal cleft.

“Elana did have her larynx repaired and continued to wheeze even after that. The doctors were saying it would take time (and) as she got older, she would get better. But they kept reassuring me that there was absolutely no way that she could have these two rare conditions,” Karen McEwen said.

After having testing done at the University of North Carolina at Chapel Hill, a leader in PCD research, Elana was diagnosed with PCD shortly after turning 4 years old.

Marc Barry Hershenson, a medical doctor with C.S. Mott Children’s Hospital in Ann Arbor, has been by her side since she was 2 years old.

She has had more than 70 surgeries and 20 sets of ear tubes. In high school, she had to get hearing aids due to eardrum damage.

 

Growing up
Elana McEwen went to Conant Elementary School as a child and Bloomfield Hills Middle School, now known as South Hills Middle School. She said she was not able to go to preschool because she was too sick, so her first school experience was going half days in kindergarten.

“I have missed a lot of school throughout life just due to being in the hospital and not being able to go,” Elana McEwen said. “Luckily, the schools have always been accommodating.”

She said kindergarten was a challenge because it was hard making friends at first, but eventually she made a bunch of friends who have been very supportive.

“No one ever really picked on me for having a disability,” she said.

When she got hearing aids, she was worried that the kids at school would not be kind, but she said her friends were very supportive when she told them.

However, she said sometimes it was hard to keep up with academics, sports and career planning.

“The harder I work, the more it wears down my body and the more I get sick. Since I’m at half the lung capacity that everyone else has, it’s harder for me to keep going and do all these things without getting sick,” Elana McEwen said.

She has always been very involved. When she was a kid she took part in dance, gymnastics and piano. When she got older, she played tennis and soccer and was on the poms team.

Once the pandemic hit, she and her family had to be extra careful. Her senior year of high school, she only went to school in person for one day.

 

Going off to college
Elana McEwen said going off to college was very exciting, but she knew it was scary for her parents. She said when she was little, they were told that she might not be able to live on her own or go to college.

“It was a big moment for me to go to college and live on my own and be in the dorm,” she said.

When she went to college as a freshman in 2021 the pandemic was still going on. They were advised by her doctors not to have her go away to school since she was at high risk of getting the virus.

Karen McEwen said that even though she knew Elana had the skill set to live on her own, she was worried about sending her to college because of the pandemic. However, she was proud of her because “she was determined to live her life, not let the disease hold her back, and just to go forward and meet her goals.”

The first week of school, she got sick and her mother drove an hour and a half to pick her up. After doing so, she immediately brought her to C.S. Mott Children’s Hospital.

After that, they made arrangements to get her a car on campus so her roommate would be able to drive her to the hospital if there was another emergency.

As she adjusted to her surroundings, she was doing better and getting sick less, especially during her sophomore year. Her junior year, she was going out more and socializing, along with fulfilling internship responsibilities, which led to her getting sick more.

“After adjusting my senior year, I haven’t gotten sick at all,” she said. “I’m actually at the best health that I have been in a while, thankfully, and I’m still able to manage doing what everyone else is doing.”

As an accounting major, she has been successful in leadership during her time in college. During her senior year, she has been the internal vice president for the Women in Business Students’ Association.

 

Post college
Elana McEwen is set to move to Atlanta soon and take part in an internship this summer. She will be attending Georgia State University for her master’s degree and pursue a career as a CPA at the same time. She has a full-time job offer that she said will start in 2026.

Even though she knows her daughter knows how to advocate for herself if she gets sick, Karen McEwen said she is not looking forward to Elana McEwen moving away.

“I thought her moving away an hour and a half was stressful. I can’t even wrap my head around her being that far away,” Karen McEwen said.

Elana McEwen has a bronchoscopy procedure every year to clear everything out. Her next one is in May, before she makes her big move to Georgia.