For years, Jamie R. was told, “It’s all in your head,” “You should see a psychiatrist,” “There’s nothing wrong with you.” Medical tests like MRIs would always come back negative.
It’s that way for many rare disease patients living far away from advanced medical facilities. Jamie, 35, resides in the small city of London in southeast Kentucky.
“I ran out of places to turn,” she says.
Growing up, she suffered from migraines and had unusual flexibility in her body. “I always thought it was normal to be so ‘bendy,’” she said, adding that family members were extremely flexible as well. “My grandfather could put his feet behind his head.” Over time, the headaches became worse, and by 2011, they had increased in frequency and severity. “I was eating Advil,” she said.
Then one day “I got a headache that didn’t go away.” Vertigo set in as well as other symptoms. “It just got worse and worse. I had to quit driving. I couldn’t walk without assistance. I stayed on the couch or on the bed.” She said she developed blurred and double vision and had to quit her job as an executive administrative assistant. “I went from working 50-60 hours a week and doing my own art business [Akari Studios] on the side” to producing only small art projects.” Jaime’s specialty was large stained glass pieces.
Desperate for answers, she went by car to Vanderbilt in Nashville, Tennessee. Her husband, Paul, who is disabled, did the driving. “It was a very hard trip,” Jaime said. At Vanderbilt, she was diagnosed with a very rare connective tissue disorder known as Ehlers-Danlos Syndrome (EDS). She had an MRI, but the report indicated there was nothing wrong.
Soon after, Jaime was relieved to get an appointment with a leading authority on her disease, Dr. Fraser Henderson of the Metropolitan Neurosurgery Group in Lanham, Maryland. This time, Angel Flight provided the trip for her and Paul.
“Dr. Henderson walked in the room and looked at the MRI. In 60 seconds he said, ‘I see what’s wrong with you.’ My whole life changed at that moment.” Not only did he confirm the diagnosis of Ehlers-Danlos, he also said she had Chiari Malformation and recommended brain surgery.
Once again, Angel Flight provided a trip for the procedure. This was in January of the current year. The five-hour surgery included decompression of Jaime’s brain stem, restoration of craniocervical fluid, and repairs as well as installation of a titanium plate and two titanium rods. “He said I had cranial cervical instability—the worst case he’d ever seen. He saved my life,” Jaime said.
Follow-up care, a second surgery, and additional treatment for other serious medical issues has meant more Angel Flights to Maryland. Jaime has taken five to date, with the possibility of another trip to see Dr. Henderson for a bulging disc. “The pilots have been so wonderful—every single one,” she said.
“I lean on my faith, my friends and family. I’m a firm believer in God.” She added that Paul, who has “never doubted me” through all the ups and downs of her illness, “is my hero.”
Here positive attitude and radiant smile are inspirational. As an advocate for EDS, Chiari Malformations, tethered cord syndrome, dysautonomia, and rare diseases in general, Jaime wants to raise awareness and support of these painful and complex conditions.
“We’re only here for a certain amount of time,” says this fearless Kentucky woman, and urges people to “make the most of your time.”