“She is wasting away in front of our eyes,” Teen on the road to recovery after rare diagnosis

OKLAHOMA CITY (KFOR) – A teen is on the road to recovery and getting ready to start her senior year after battling a mysterious illness her family was afraid would take her life.

“I thought, she is wasting away in front of our eyes,” said Dr. Sherisa Warren, with The Cardiovascular Health Clinic in OKC.

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

Cook is slowly starting to gain back the weight she lost during a two-year illness. At the beginning, it wasn’t just trouble eating, she was having trouble breathing.

“As soon as I’d inhale, I had to exhale immediately because I couldn’t hold it there,” said the 17-year-old Cook. “From the moment I sat up in bed, I knew that I was going to be hurting all day.”

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

“I was told that I had an eating disorder and that I 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 taken to the hospital because she only weighed 80 pounds. She had a feeding put in for four months.

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

Cook said the doctor gave her a scan showing something was wrong with her celiac artery that comes off of her aorta. They told her it could be Celiac Artery Compression Syndrome, or MALS. Her family believed they found the answer, but said they still faced roadblocks.

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

Her family said they eventually found Dr. Sherisa Warren at the Cardiovascular Health Clinic in OKC.

“She needed fast help, immediate help,” said Dr. Warren. “Her presentation was the worst we’d seen all year.”

After more tests, Dr. Warren confirmed Cook had MALS.

The teen’s breathing muscle tissue, surrounding her aorta, was too tight, almost completely smashing down her Celiac Artery and nerve tissue around it

“In addition to the mechanical compression that ends up with the vomiting, the diarrhea, the bloating, the intolerance to food that goes along with this condition,” said Warren. “The fix is actually to go in and dissect that tissue out that is squishing the artery and release it.”

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

“It may be more of a under-diagnosed condition in my opinion,” said Dr. Warren. “Some patients have it to a certain extent and don’t know about it.”

In May, Cook got the surgery. Since then, she’s gained 15 pounds. Sunday she weighed 95 pounds. She’s 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 experience similar symptoms and may have this, but they’re not being told they have it,” said Cook.

“It doesn’t matter what condition it is. Don’t let anyone tell you something that you don’t feel is right with your own body,” said Dr. Warren.

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