Steve Haskew remembers the day the back pain started. He was just 29 years old, laying sod in the yard of this new home in Texas.
"It was the first clue, but I didn't know until years later," said Haskew, now a 63-year-old project director for a shipyard business in Houston, whose lower back pain plagued him for a decade before he got a proper diagnosis.
Today, after years of inflammation, his entire spine is like a rigid stick of bamboo, pressing on nerves and causing increasing numbness in the lower part of his body.
"If I want to see something to the side, I have to turn the whole body," said Haskew. "And I am a little bit stooped. Fortunately, my spine fused fairly straight. Some people are literally chin to the chest."
Haskew has ankylosing spondylitis, or AS, which can lead to what is identified on X-rays as bamboo spine due to the way it fuses the backbone, causing irreversible deformity. There are effective treatments, but no cure.
And now, he has been dealt another blow -- his 33-year-old daughter Kate is also struggling with an AS diagnosis, discovered after the family participated in genetic research.
Though she has known most of her life that it could happen to her, Kate was still stunned.
"I got a phone call saying, 'You have it,' and I burst into tears," said Kate, a school psychologist living in Phoenix. "I feel sometimes like I am at war with my body or I am in a chess game and I have no idea what move it will play next. None of us know."
So far, her case seems milder than her father's, "but having been around me, she has her fears that it could turn out like mine," said Haskew.
Kate's prognosis is, indeed, better than her father's. That's because she was diagnosed early -- about three years ago at exactly the same age her father was when he first noticed his symptoms. As a result, she was able to get started on treatment that will likely given her a better outcome.
"I feel lucky," she said. "Quite frankly, if Dad and I were not in a study, I would never have been diagnosed."
Ankylosing spondylitis is a form of arthritis of the spine that usually strikes between the ages of 15 and 35, when patients are "young, bullet-proof and 20-feet tall," according to Laurie Savage, executive director of the Spondylitis Association of America (SAA), an organization that provides education and research.
"Spondylitis" means inflammation of the vertebrae and "ankylosing" refers to joint fusing and immobility. AS and its related diseases are the most overlooked cause of persistent back pain in young adults and can also lead to damage in the eyes, heart and lungs.
According to the Centers for Disease Control and Prevention and Prevention, AS affects up to 2.4 million Americans -- more than multiple sclerosis, cystic fibrosis and Lou Gehrig's disease combined. It is nearly twice as common as rheumatoid arthritis.
Often dismissed as "growing pains," AS causes joint pain and stiffness, which is often worse at night, but resolves during the day. The pain is often eased by exercise and worsens with inactivity.
Most people with spondylitis lead long and productive lives. Treatment regimens include medication, exercise and possibly physical therapy, as well as good posture practices. Nonsteroidal anti-inflammatory drugs (NSAIDS) and new biologic medicines can reduce pain and help limit the risk of disability.