VALPARAISO — Without her confessing, no one would be able to tell Ashley Young is battling a rare disease, commonly referred to as “cheerleader syndrome.”
With a shy but contagiously positive personality, the 15-year-old Valparaiso teen does everything any normal teen would — even more than some.
She’s a freshman student-athlete at Valparaiso High School. She’s a diver, involved in multiple school clubs including Future Medical Professionals, has plans to work as a lifeguard and dreams of studying biomedical science in college.
As her mom, Michelle Young, said, everything Ashley does, she does it with confidence and a smile on her face.
But there’s something happening behind that smile — literally.
Over the last year-and-a-half, Ashley’s jaw bone has been gradually dissolving and falling due to idiopathic condylar resorption (ICR), a disease that affects the temporomandibular joints that keep the jaw hinged.
As her lower jaw and chin have been dropping farther, a gap has formed between her upper and lower teeth, making it difficult for Ashley to eat, speak and fully close her mouth.
“Every time she opens her mouth or tries to eat, the temporomandibular joint is rubbing and it rubs off. It can’t get back up and her jaw gets stuck,” Michelle said. “It’s hard — impossible really — for her to close her mouth, so she can’t bite a lot of food. She’s chewing basically with her top teeth and tongue.”
ICR affects less than 1% of the population.
“It’s just become a part of me now. I mean, I’m just used to it,” Ashley said, shrugging her shoulders.
But, that will change soon, as Ashley is just weeks away from a surgery that will hopefully correct the rare condition.
‘Nobody understands it’
Having problems with her ears before, Ashley didn’t really think twice about the pain she was experiencing roughly a year ago. She just assumed it was another ear infection.
But the sharp pains got worse and weren’t going away.
That’s when her orthodontist noticed something alarming during a regular braces checkup.
“Scans were showing that her jaw was falling and her teeth were shifting,” Michelle said. “He kind of thought (it was IDC), but wasn’t sure. No one had seen that before.”
Ashley’s orthodontist presented the findings to a panel who determined “that’s probably what it was,” Michelle said. A specialist was later able to confirm the diagnosis with the doctor.
The diagnosis results were surprising and confusing to the mom and teen.
“It’s not really talked about because it’s so rare. Even doing your own research on it is difficult,” Michelle said. “Nobody really completely understands and it's even hard for us to describe it to people.”
Dr. Larry Wolford, an oral and maxillofacial surgeon, said ICR is a well-documented but poorly understood progressive disease that occurs most frequently in young females. It also rarely develops after the age of 20 years.
“ICR causes mandibular condylar resorption and, with loss of vertical dimension of the condyle, it can create occlusal (bite relationship) and musculoskeletal instability, resulting in the development of dentofacial deformities, temporomandibular joints dysfunction, and pain,” Wolford wrote in a journal article he authored, “Idiopathic condylar resorption of the temporomandibular joint in teenage girls (cheerleaders syndrome),” published by the Baylor University Medical Center.
While doctors have made strong connections to hormonal levels fluctuating, as more patients are teenage girls in their pubertal growth phase, Wolford said the “specific cause of ICR has not been clearly identified.”
“They don’t know what caused it. It’s just a ‘freak thing,’” Michelle said, laughing with Ashley.
The best results in treatment of ICR involve early detection of the disease process and early surgical management, Wolford said.
MRI scans are showing that the dissolving and shift in placement of the jaw is “slowing down, but not in recession,” Michelle said. So, now is the time to act.
In June, Ashley will undergo total reconstruction surgery.
During the 10-hour procedure, Ashley’s upper and lower jaws will be re-positioned to close the bite and titanium hinges will be added to fix her skull.
“They will take her joints out and put artificial ones in, especially made for Ashley, so she will be able to do what we all do normally,” Michelle said.
Only very few surgeons in the country will perform this extensive procedure, Michelle said, which contributes to the very high medical bills.
A portion of the surgeon’s fee is not covered by the family’s insurance and the upfront, out-of-pocket cost is nearly $50,000. That excludes the additional costs that have to be made which include, but are not limited to, the hospital stay, MRIs and anesthesiology.
A GoFundMe page has been created to help the family pay for Ashley’s ICR restrictive surgery. Roughly $11,000 has been raised of the $25,000 goal.
The healing process will be difficult, Michelle said.
For the first few months, Ashley will be completely bandaged with her mouth wired shut. She will placed on a strict liquid diet and her hearing will be impaired due to swelling. She will rely on writing on a whiteboard to communicate.
“A full recovery can take up to a year,” Michelle said. “She’s going to have to relearn how to walk, talk and eat with a new jaw. Everything is going to be a process.”
For Ashley, the toughest part isn’t having her mouth wired shut or learning how to function after surgery. It’s missing out on diving.
“I can’t do any sports or physical activates at all. That’s the hardest part,” Ashley said. “I’m going to miss it.”
Since the ICR hasn’t interfered or caused Ashley any pain while she’s in the water, the young athlete has been staying active leading up to the big surgery.
Ashley’s been diving since she was in fifth grade.
“I used to do gymnastics, but I decided that I didn’t really want to do that anymore and I was ready for something else. I started taking swimming lessons and was interested in the diving board and practiced jumping off of it. My instructor said, ‘Well, let’s get you started with some diving.’ That’s how it started,” Ashley said. “I really love it and have been practicing since.”
Her practice over the years has paid off competitively.
Ashley was recognized as this year’s Most Improved Diver on Valparaiso High School’s Women’s Swimming and Diving team during the school’s recent winter sports awards banquet.
Throughout her journey with ICR, Ashley said her team and diving coaches have been extremely supportive and understanding.
“When my coach found out that I would be on a liquid diet, he started making jokes like ‘You’re already skinny enough. You don’t need that.’ It’s just funny and helps make it all a little easier,” Ashley said.
Ashley said she believes it’s important to help spread awareness about ICR to hopefully help any other young girl who may be fighting the disease like her.
“Don’t be afraid. I mean, it’s going to be fixed sooner or later, you know? It’s going to take time with recovery, everything will take time. But, it will be all right,” Ashley said.