Teen Gets Relief From Ehlers-Danlos

Finally, a success story!

South Carolina Teen Gets Real Treatment

Two years ago, Mathis began having nonstop headaches that couldn't be explained.A year later, her legs started to feel numb and she walked with short, slow steps.
Two surgeries later, Mathis now walks with a normal stride, drives and dances. She's taking a new approach to life.
"She's a bit of a miracle child," said her grandmother Pat Mathis. "A lot of prayers went up for her, and the Lord answered them."
Mathis, 19, was diagnosed with Ehlers-Danlos syndrome, a neurological condition, last December. She visited several doctors who couldn't explain the headaches or what caused her legs to give out. It was frustrating; at times, she felt as if people doubted what she complained of feeling.

"It was very difficult," Mathis said. "It was a lot of going to doctors who said, 'Maybe it's this,' and they'd do tests and my tests would come back normal. We could see how things were getting worse, but no one could do anything about it."
She visited family doctors, neurologists, ear, nose and throat doctors and a chiropractor. Mathis was told she might have had migraines, lupus or fibromyalgia.
"It was frustrating," said her mom, Lisa Mathis. "There was never an option to not follow up on what was going on."
Once Mackenzie had difficulty walking long periods of time and needed wheelchairs at the mall and the airport, the family started searching harder.
A family friend got Lisa Mathis in touch with a family whose children were diagnosed with Ehlers-Danlos. The symptoms that family's children experienced matched what Mackenzie was dealing with. Lisa Mathis said this helped get the family on the right track to find a diagnosis.
Ehlers-Danlos is a collection of genetic disorders that affect collagen, a protein that adds strength and elasticity to connective tissue. Patients often experience a downward pull of the spinal cord, which causes Chiari malformation.
According to Mackenzie's doctor, that's when the cerebellum, which controls balance, and the brainstem push downward. The pressure creates a range of problems, including the headaches and balance issues she experienced.

Changing her life ... and others'

She underwent two surgeries that have returned her life to normal.
One surgery removed some of the ligament that pulled her spinal cord downward. The second surgery was a cranial spinal procedure, which improved the relationship between her skull base and her upper spine to eliminate the brain stem's deformation.
"Those two surgeries completely changed my life, and I can now do things I didn't think I would do again," Mackenzie said.
Lisa Mathis said her daughter's recovery was quick compared with some who have been diagnosed with Ehlers-Danlos.
"Her story is not typical of these patients, probably because we moved quick compared to others," said Lisa Mathis, who said it sometimes takes people 10 to 20 years to receive an Ehlers-Danlos diagnosis.
Mackenzie Mathis is helping other Ehlers-Danlos families. She's learned that about 50 families in North and South Carolina are dealing with the condition. In January, she'll host a support group for those families in Spartanburg. Her neurosurgeon is based in Bethesda, Md., and she serves as a spokeswoman for the hospital and answers questions from Ehlers-Danlos patients through e-mail and Facebook. She's also blogging about her recovery, and the blog has been read by people as far away as the United Kingdom.

 If more people know, more people will be diagnosed!