LAS VEGAS (KLAS) A Henderson teen went from being a competitive athlete to barely being able to walk, bound by crutches and wheelchairs. Now, she’s the CEO of a nonprofit she started to help educate others.

It took nearly a year for doctors to diagnose Lily Houle with Complex Regional Pain Syndrome (CRPS) and another year after that for her symptoms to completely stop.

She later started a nonprofit to educate others, so they don’t need to wait as long as she did for a diagnosis.

Houle was 15 at the time her leg started twitching uncontrollably. She thought she pulled her hamstring playing soccer. They rushed to the hospital in search of answers.

Houle’s Mom, KC Thompson, said no one knew what she had.

“It was a revolving door,” Thompson said. “You’re at the hospital, we saw one doctor, and they said, ‘That’s weird,’ and then we’d see another doctor who said ‘Well I don’t know what it is, let me go back in office.’ And another doctor… five doctors within a week.” 

Specialist visits, procedures, testing, Houle said it was extremely daunting as the weeks progressed,

“That was the hardest part,” Houle said. “And with Covid, every appointment you’d wait another four weeks, those four weeks you’d be stuck not doing anything. “

Eventually, they booked an appointment with UCLA, where Lily underwent an EEG and a spinal tap.

“They were checking for MS, and they pulled me outside and said we don’t know what it is, come back in 12 months,” Thompson explained.  

They pushed on, taking a trip to Phoenix Children’s Hospital, followed by a trip to the Mayo Clinic in Minnesota. Doctors there recommended physical therapy which Thompson said only aggravated her daughter’s spasms.

Eight months had passed since the twitching began, and still no diagnosis or relief for Houle.

Houle said meditation, yoga, and journaling helped her through the dark days of seeing 30 doctors in nearly a year, all the while attending soccer practice.

Soccer was the socialization to keep her going, the motivation to keep searching, Houle said. And search they did, connecting with yet another doctor, this time in Utah.

“We talked for about four hours, they wanted to know every detail,” Thompson said, describing the cautiously optimistic visit. “We met with every specialist separately. They told us to go to lunch and when we came back, we all sat at a big table. The head specialist slid a paper across the table and said, ‘This is what we think your daughter has: CRPS.’ We started crying. It felt like the nightmare was over.”

Houle said it was such a relief.

Only about ten percent of people with CRPS have movement disorders, like Houle’s. The remainder have burning pain. Her unusual symptoms made it tougher to diagnose.

Within a week of taking a high dosage of medicine for nerve pain, Houle’s spasms almost completely went away, but it would be another year and a surgery before Lily fully recovered.

Her goal was to always get back on the field to play soccer, and she worked her way back.

Now, this 18-year-old is headed to Clark University in Western Massachusetts to play competitive soccer this fall.

Houle started her own nonprofit, called CRPS Strong, to educate others and help raise money for research and clinical trials for CRPS, as well as sponsor patients in need of treatment.

She is also pursuing medicine, and writing a children’s book, to help others focus on the positive during their treatments.