Local avoids blindness from rare disorder
Last updated 10/31/2023 at 10:36am
Pat Lamoureux lives with her husband, Roger, in a home on the edge of Sisters Country. They've created a beautiful place with trees turning brilliant red and yellow in the autumn and a garden full of flowers that bloom in a rainbow of colors throughout the summer months. She finds peace and satisfaction tending their property while Roger works on his latest woodworking project in his shop.
Being able to see the outcome of their hard work was almost lost. When she began having debilitating headaches around her temples, and a painful jaw she didn't realize that without treatment, she would lose her eyesight with no hope of it returning. Because of her husband's ability to research symptoms and Pat's quick decision to check it out with her doctor, her eyes can still see the Cascade Mountains and all the beauty of the High Desert. She wants her community to learn from her experience, so no one has to lose their eyesight due to an illness like hers.
The Lamoureux family moved to Sisters from Massachusetts in July of 1992. They moved west seeking easier winters and less snow because of Roger's health. That winter they rented in Tollgate while they built a home on Cascades Estates Drive off of Fryrear Rd. But what they'd been told about Central Oregon winters and what transpired was vastly different.
Pat laughed when she recalled their first Central Oregon winter.
"Everyone told us it snowed in Sisters Country but always melted the same day. That didn't happen. The winter of '92 to'93, we had over seven feet of snow... so much for moving away from the snow," she said. "But it didn't deter us and here we are 31 years later with two adult daughters who graduated from Sisters High School, Jennifer in 1994 and Eryn Elbers in the class of 1999."
In mid-July, Lamoureux began waking up with a very heavy head.
"I had to use my hands to lift my head off the pillow. I had extreme tightness in my shoulder and neck area, which isn't uncommon for me because that's where I hold my tension. I thought it was weird, but I just thought I had a cold or slept wrong," said Lamoureux.
But as the days progressed, the heaviness in her head changed.
"Then I had discomfort from my neck up on both sides of my head with tightness and tenderness in my head. A big part of it was that my jaw was so tight I couldn't chew anything. That pain radiated into my ears like a bad case of temporomandibular joint disfunction (TMJ)... which I never had before. I realized I had to see a doctor."
Two weeks after her first doctor's visit, Lamoureux finally learned what was wrong with her. She was diagnosed with Giant Cell Arteritis (GCA) which is an inflammation of the lining of the arteries (often arteries in the head) which can come and go or subside temporarily. Because it often affects the temple area, it is sometimes called Temporal Arteritis. Permanent blindness can happen if not treated with corticosteroid medications (Prednisone) in time.
According to the Mayo Clinic general signs and symptoms of GCA may include: persistent, severe head pain usually in the temple area; scalp tenderness; jaw pain when chewing or opening the mouth widely; fever; fatigue; unintended weight loss; vision loss or double vision; and sudden, permanent loss of vision in one eye.
Since her diagnosis, Lamoureux is slowly able to decrease the amount of Prednisone she's taking. She's on a drug called Actemra to treat the GCA. She's grateful that the company that produces the Actemra, Genentech, had a program to help patients unable to pay for the drug. The Actemra is given by weekly injections into the stomach costing $538 each. Lamoureux's physician from Summit Medical Center, Dr. Bright submitted paperwork on Lamoureux's behalf and also had Roger fill out paperwork for the Genentech Foundation.
"It's now fully funded," said Lamoureux. "What a gift!"
So far, Lamoureux hasn't met anyone else with GCA, but her doctor told her five other people in Deschutes County have recently been diagnosed with it. She chose to go public with her situation in the hopes that she might be able to help others experiencing similar symptoms to hers.
"I've chosen to be positive about it. I feel so blessed with my doctors," she said. "If even one person reads this and realizes they have symptoms, that makes it worth it."
She's taking one day at a time, and knows God has a plan for her.
"November is the month of Thanksgiving and I think sharing this with others is another thing to be thankful for," she said.
Lamoureux is happy to talk to anyone with questions about her condition. She can be reached at 541-383-1821.