Teen on the road to recovery after rare diagnosis

OKLAHOMA CITY (KFOR) — A teenage girl is on the road to recovery and preparing to start her senior year after battling a mysterious illness her family feared could take her life.

“I thought she was wasting away before our eyes,” said Dr. Sherisa Warren, of OKC’s Cardiovascular Health Clinic.

“I felt like I was going to vomit almost every time I ate,” Ryanne Cook said.

Cook is slowly beginning to regain the weight she lost during a two-year illness. At first, it wasn’t just hard to eat, she had trouble breathing.

“As soon as I inhaled, I had to exhale immediately because I couldn’t hold it in,” Cook, 17, said. “From the moment I sat up in bed I knew I was going to be in pain all day.”

Cook’s family went to several doctors, their answers never seemed right. A doctor suggested that it was all in her head and that she should go to a psychiatric ward.

“I was told I had an eating disorder and was being bullied at school, which is funny because I’m homeschooled,” she said .

Cook stayed in bed, sleeping 18 hours a day. She often found escape through music and her artwork. In December, she was rushed to hospital as she weighed only 80 pounds. She was fed for four months.

“I felt physically and mentally drained the whole time,” Cook said.

Cook said a doctor gave him a CT scan showing something was wrong with his heart. They told him it could be celiac artery compression syndrome, or MALS. Her family believed they had found the answer, but said they still faced roadblocks.

“We couldn’t find any doctors here who were willing to do the operation because they didn’t believe MALS existed at all or they just didn’t believe it was my problem,” he said. said Cook.

Her family said they eventually found Dr. Sherisa Warren at OKC’s Heart Health Clinic.

“She needed quick help, immediate help,” Dr Warren said. “His presentation was the worst we’ve seen all year.”

After several tests, Dr. Warren confirmed that Cook had MALS.

The teenager’s respiratory muscle tissue, surrounding her aorta, was too tight, almost completely severing her celiac artery and the nerve tissue around it.

“In addition to the mechanical compression that ends in the vomiting, diarrhea, bloating, food intolerance that accompanies this condition,” Warren said. “The solution is actually to go in and dissect that tissue that’s crushing the artery and release it.”

Dr Warren said MALS is a random fluke that two in 100,000 people are born with.

“It may be more of an underdiagnosed condition in my opinion,” Dr. Warren said. “Some patients have it to some degree and don’t know it.”

In May, Cook underwent surgery. She has since gained 15 pounds. On Sunday, she weighed 95 pounds. She is on the road to recovery.

Now she wants others like her to know they’re not alone.

“There are probably a lot of people who are experiencing similar symptoms and may have this, but they’re not being told they have it,” Cook said.

“It doesn’t matter what condition he is in. Don’t let anyone tell you something that you think is wrong with your own body,” Dr Warren said.

For more information on MALS syndrome, visit the National MALS Foundation.