“Stacey West, you just completed the 13.1-mile Long Beach Half-Marathon, even though you suffer from inflamed and swollen joints and can hardly get out of bed in the morning. What are going to do now?”
“I’m going to painfully walk back to my car and go home.”
No, the Temecula runner didn’t win a trip to Disneyland for finishing the race Sunday, Oct. 7, in two hours and 16 minutes. But he had a good excuse, other than Ankylosing Spondylitis, also called AS, a disease as hard to live with as it is to pronounce.
“It was almost impossible to find a parking spot in Long Beach,” he said. “By the time I found one, I had to run three miles to get to the starting line on time. Then I had to run the 13 miles.”
West, 43, was diagnosed with Ankylosing Spondylitis, thought to be genetic-related, about 10 years ago. A disease without a cure, it causes inflammation of the joints between the spinal bones and between the spine and pelvis. Over time, the affected spinal bones join together.
“The flare-ups can last from a few days to a few months,” he said. “When the disease is active, most mornings I can barely walk or even pick up my kids.” (He and his wife, Jessica, have two daughters, Lauren, 8, and Audrey, 2.)
The less you move, the less it hurts, he said.
“In a way, the disease encourages you to limit your mobility. I’ve found the best way to become functional during a flare-up is to fight through the pain and start moving.”
That’s where the running comes in.
“When I was first diagnosed with AS, my doctor told me the disease usually leads to loss of mobility. In many cases, the spine fuses after years of inflammation and all flexibility is lost. She encouraged me to not give in to the pain, to stay as active as I could as long as I could. I took her advice and started running three miles every day.”
The pain becomes manageable after five to 10 minutes, he said.
An electrical engineer at Mag-Lite in Ontario, West had hoped to run the full marathon in Long Beach, but a flare-up he’s had for the past several weeks compromised his training. However, with Sunday’s finish, he has completed the “beach cities challenge,” earning a medal after finishing in the Orange County and Surf City races earlier this year. His next race will be in Dallas in December.
“My doctor is amazed that I have been able to run marathons and half-marathons,” he said.
West has an identical twin who also has AS. Both were adopted at birth, and have learned that their birth mother does not have it. Their biological father has not been found. The Wests’ daughters will be tested when they’re teenagers.
“A lot of people have this disease for 10 or 12 years without knowing it,” West said. “It’s good to have it checked out if you have the symptoms.”
One example of symptoms may hit home:
“During more severe flare-ups, even a hug can be extremely painful.”
OCCUPATION: An electrical engineer at Mag-Lite in Ontario
NOTEABLE: West suffers from Ankylosing Spondylitis, which causes inflammation of the joints between the spinal bones and between the spine and pelvis.
NOTEABLE: Even with the disease, West competes in marathons and half-marathons, and completed the 13.1-mile half-marathon in Long Beach on Sunday, Oct. 7