Table 2 Shortcomings of existing screening procedures

Lengthy trial & error approaches

“I went on every different drug you could think of, you know, just – you got this. And then every year they’d give me a new disease. Oh, you got this disease, sacral plexus, you know, they’d tell me whatever and it was like, you can’t even spell it, some of the diseases they’d give me. And every year I’d have a new disease…” (46 year old man)

Intermittent symptoms need to be taken into consideration

“It would be a problem for -- a severe problem for, like, 2 to 4 days, a little bit of an issue for anywhere from 2 to 3 weeks. I’ve learned these things pretty much last 2 to 3 weeks, and then they go away if they’re going to go away.” (47 year old man)

Symptoms minimized or disregarded

“Like, I would get sent to one doctor, and I had x-rays taken, and, oh, well, there’s nothing wrong with you. I had one doctor that told me it was all in my head… I was very, very upset when she told me, everything, all my pain, everything was in my head, I was crazy.” (48 year old female)

Early symptoms can be due to many other things

“it wasn’t the first thing that anyone thought, you know, because it could be ten other things.” (34 year old male)

Doctors give up when they can’t figure it out

“So, I went to the emergency room and they were going to send me home again that Friday night because they said we can’t really figure out, like, nothing seems to be wrong with you” … “It’s way more disheartening, frustrating, and discouraging to be told constantly there’s nothing wrong with you.” (34 year old male)

Patients are having to do the legwork

“So I had done a lot of research on different things and I just said to my doctor do you think because I have autoimmune any of that is ankylosing spondylitis. And she said huh, she said, well, you know it’s usually males in their late 20s, 30s, and she said… But she said let’s test you… I tested positive for the HLA-B27, then she sent me to the rheumatologist who then did the x-ray and saw the sacroiliitis and put it together.” (61 year old female)