To some, North Dakota might be far from the equator, in the middle of nowhere. To others, it is God’s country. But the farther north of the equator, the higher the incidence of diseases such as ankylosing spondylitis, so—in theory—many people “up here” must have it, yet the numbers of those diagnosed with spondylitis-related diseases and the public’s awareness of the diseases seems low. Why? Perhaps it’s a lack of education.

North Dakota’s first Spondylitis Association of America’s (SAA) educational support group hopes to change that.

“I’ve evidently had ankylosing spondylitis for decades, but it was only diagnosed in the last two years,” says Smith. “Knowing that I have AS helps me understand why my fused sacroiliac joints can’t work right. It also helps me understand the flare-ups, the stiffness, the chronic pain and iritis, and the other infections I’ve had through the years.”

Anxious to have someone to talk to about what she was learning, Smith found the Spondylitis Association of America website. Through them, Smith said, “I was put in touch with others who suffer from this under-diagnosed, potentially debilitating disease, and now, want to reach out to others who suffer from forms of spondylitis.”

With that purpose, and with the support of the Spondylitis Association of America, Smith invites anyone (or any family member of anyone) with spondylitis-related diseases who is within driving distance to join the new group as they embark on this journey. “You can also fly in,” says Smith. “We have a wonderful little airport for small planes.”

In the past couple years I’ve become more familiar with spondylitis than I would have expected. Prior to a discussion with my rheumatologist at that time, I had not heard about it at all but had simply been dealing with the symptoms for years. Many people now ask, what is the blue wrist band you are wearing for? I tell them about spondylitis and receive the similar, I’ve never heard of it, remark. It truly seems to be the unheard of disease.

I’ve had the good fortune to work in the information technology business since 1975. As we all know, the advancements and benefits the world has realized from the use of computers is significant. The Internet has offered us a wealth of knowledge at our fingertips, but we typically only search for information we have a need to seek out. A Google search on “spondylitis” returned about 18,200,000 results and our own SAA came up number two of the non-sponsored links, very impressive I might add.

It would be my hope through this support group, we are able to help get the word out and share our experiences. We need to help each other as we face AS head on. We each have an opportunity to make a difference. I hope to see you at our next meeting!