Dancing, ceremony help Sask. teen cope with rare disease

Like most teenage girls, Jaycene Lathlin-Eyahpaise loves to play sports, dance and hang out with her friends. However, five years ago, the now 18-year-old from Beardy’s and Okemasis’ Cree Nation had to put those things on hold after being diagnosed with a rare illness.

Vogt-Koyanagi-Harada (VKH) disease targets several parts of the body — including a person’s eyes, ears, skin and nervous system.

Oftentimes, the most noticeable symptom is rapid vision loss that usually comes after things like severe headaches, vertigo, nausea and drowsiness, which is how Lathlin-Eyahpaise said she first noticed she was sick.

“I remember always constantly sleeping, but sleeping and staying up both hurt my head so much I couldn’t do anything. I felt so depressed,” she said.

After countless trips to Saskatoon and long waits in doctors’ offices, at 13 years old Lathlin-Eyahpaise was officially diagnosed with VKH disease.

“It really, really broke me down. I was just angry at everybody. All these emotions just came crashing down on me,” remembered the teen’s mother, Charlotte Eyahpaise.

“It really broke me when I saw my daughter looking out the window, sitting by herself like she was looking out for the last time.”

A few months later, Lathlin-Eyahpaise lost her eyesight.

“I remember seeing black for half of my vision, then it started increasing more and more, then I started completely seeing black,” she explained.

Around that time, Lathlin-Eyahpaise’s mother said she started getting bullied at school.

“Students were teasing her; they were laughing at her because some students and teachers had to read for her. She couldn’t read at all because she couldn’t see,” Eyahpaise said.

“I went and gave a speech and stood in front of the class and told them about the disease. After that, they were all understanding and they knew she was going blind.”

Turning to faith, culture for support

While on the outside Eyahpaise said she remained strong for her daughter, on the inside she said she was crumbling. That’s when the whole family turned to faith and culture for support.

“We all went to church, we all sat in a circle and we prayed and prayed. A couple days later, we went to a sweat ceremony to help us get healing for her eyesight,” she remembered.

“I went basically to the ends of the earth to keep my daughter from going blind.”

During that time, Lathlin-Eyahpaise said she stayed home and laid in the darkness, praying it would soon pass. She said it wasn’t until she started dancing at powwows and attending round dances again that she felt her true healing begin.

“I love dancing; it brings peace to me. I feel comfort and I feel alive and really healthy,” she said.

About four months later, Lathlin-Eyahpaise said she awoke to a miracle.

“I remember waking up and running to my mom’s room and telling her I could see,” she said through tears.

The road to recovery

After testing different medications and therapies for several months, Lathlin-Eyahpaise said she finally found what worked for her and began the road to recovery.

She added she’ll never take her health — especially her eyesight — for granted again.

“I’m doing really good. I feel happy and I’ve never felt so much positivity in my life. I feel so grateful,” Lathlin-Eyahpaise said.

“You only get one pair of eyes once in a lifetime and I don’t want to go blind ever again.”

While Lathlin-Eyahpaise will have to take medication for her VKH disease for the rest of her life, and there will always be the possibility she could lose her eyesight again, the teen said she’s ready to move forward as her mom watches from the sidelines.

“It feels so good. Sometimes, I’m still in shock and amazement,” said Eyahpaise. “She grew up from this little girl to this teenager who got sick and tried to overcome being blind, to going to school.”

Starting this month, Lathlin-Eyahpaise is moving to Treaty 4 to begin her post-secondary education at the University of Regina.