That may give doctors a "much better idea to the extent it is a national problem," said Reveille. "And it's not just AS, it's the whole spectrum of spondyloarthropathies, one of the most neglected diagnoses and mistreated in much of this country."
"Now with rapidly shifting paradigms and new criteria, the burden is now on us to get the word out," he said.
Reveille has tracked Kate Haskew since she was 18, leading to her diagnosis. "My blood happened to have all the markers," she said.
Though still active in ballet, Kate lives with constant back stiffness and discomfort in her hips -- and she misses wearing high heels, which exacerbate the pain.
"Primarily, it causes overall body tension," she said. "I am uncomfortable most of the time and sometimes it hurts. I don't sit very well."
"To get a serious disease at a young age is hard psychologically, especially when you don't know it's "trajectory," said Kate.
"Occasionally when I wake up and don't feel well, I get down," she said. "At my age it impacts my dating relationships…How do I explain to my boyfriend that this is what I have and I can't tell you what it will be like in five years and yes, we could pass it on to our children? That's a big thing."
But most of the time, with the help of medication, stretching exercises and monthly massage therapy, she is doing just fine. And her father, who has "one of the most severe cases on file," is a wonderful role model.
"Growing up, he never complained about it…never let on the hurt," she said. And when Kate learned she had the disease, her father was empathetic but clear.
"I tell her she just has a little time to be down all you want," said Haskew. "Then you need to go forward and move on. It's not a death sentence, but you have to learn to live with the reality."
For years, Haskew dismissed support groups as "people sitting around complaining about what they have."
But now, Haskew and his daughter are active in groups sponsored by SAA and he serves as co-leader in Houston. Kate has bonded with others in Phoenix.
"Information is power," said Kate. "More you know and understand, the more you can take ownership."
"The only thing that limits you in ankylosing spondylitis are the limits you put on yourself," she said. "My Dad still rides his bicycle and believes himself to be a capable person. I try to have the same attitude myself. I may have to accommodate AS, but it won't define me or what I choose to do in my life."
Her father agreed.
"It's not something you go out and choose, but if you think you have it bad, come over to the cancer center in Houston and look at the children," said Haskew, ever the optimist. "That's a sad sight."