3 teens with rare pain disease connect in California
ORANGE, CA -- A Virginia girl, who traveled all the way to Orange County to treat excruciating pain caused by a disorder commonly known as the "suicide disease," is doing remarkably well following surgery. She's also connecting with others coping with the same condition.
KatieRose Hamilton can't help but smile.
"I feel like I can do more now without worrying about the pain," said the 13-year-old, who suffers from trigeminal neuralgia.
We first met KatieRose last month right before she underwent brain surgery at UCI Medical Center in Orange. During her interview last month, she told us that the pain feels like someone stabbing thick kitchen knives on the side of her head for hours and she can't do anything about it.
"It's described as the most painful condition that humans can experience," said Dr. Mark Linskey, professor of neurological surgery UCI Medical Center.
The disorder is often associated with blood vessels or nerve clusters that compress the trigeminal nerve, triggering excruciating facial pain. KatieRose's mother, Megan, says Linskey found 10 nerve compressions during surgery.
"That's pain. Every one of those is something that's wearing away the myelin on her nerves and causing these triggers to happen," said Megan.
Three weeks after surgery, KatieRose says she's only feeling ghost pain, which is expected to eventually go away. But she is off all of her medication.
"We're getting back to life again, which is pretty amazing," said her mother.
Doctors say the condition is rare in young people. Less than one percent of those diagnosed are children.
As rare as it is, KatieRose has connected with two other girls suffering from the same condition. They met online.
"It feels like I finally met someone who understands what it's like," said KatieRose.
Abbie Miller, a 14-year-old from Connecticut, will undergo the same surgery Tuesday at UCI.
"I'm OK, but when tomorrow comes, I'll be really scared," she said.
She's getting support from KatieRose and from 15-year-old Tyler Hatfield from Orange.
"I had pain for 10 months. On a scale of one to 10, it was always a 10 for 10 months straight," said Tyler.
After undergoing surgery at UCI, Tyler has been pain-free for 18 months. The Hamilton family is hopeful that KatieRose will also have the same success.
"For years and years and years, hopefully until there's a cure or something and we don't have to deal with this again," said KatieRose's mom.
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