Living every day with rare disease

Published 9:40 pm Thursday, October 29, 2009

Ankylosing Spondylitis is a rheumatic, systemic, auto-immune, chronic disease. What does that mean?

It means that AS is a disease of the joints and muscles; it affects the whole body including organs; the immune system attacks the healthy parts of the body; and it has no cure.

Ankylosing means fusing of the bone. Spondylitis is chronic inflammation of the spine.

AS runs in families. The inherited gene, HLA- B27, is in 90 percent of people who have AS.

AS is considered a man’s disease and is rare in women and affects men and women differently.

For men, the disease starts in the sacroiliac joint (tailbone) and runs up the spine. The bones become solid and fuse with no motion, a very painful period that may take years. Once the fusing is complete, the majority of the pain goes away, but the spine is now rigid and fragile.

For women, it usually starts in the neck and small joints with less fusing but more pain.

When I was a little girl, I knew when I hugged my daddy, he was very stiff. I knew he slept with a sheet of plywood under his mattress and always slept on his back. He would rather stand than sit.

It was not until I became an adult that I learned he has AS. He slept on his back so he would fuse straight and not as a hunchback.

I began asking questions about his disease and he told me it began when he was in medical school.

For ten years, he was in excruciating pain till he fused. But he never let his disease stop him. He became one of the pioneer thoracic surgeons in the Southeast.

Little did I know that he would be a model to me how to live with AS.

In 1989, I learned I carried the gene HLA–B27 after I was tested.

I was an avid tennis player and had severe pain in my neck, hands, and spine after I played. I had been going to an orthopedic surgeon for my “tendonitis” for several years.

I was misdiagnosed because my doctor believed AS only started in the tailbone, and I had no pain in my tailbone.

In 1991, the pains became so severe, I could no longer hold a tennis racket or raise my head up to serve. I told my father of my pain. He called his rheumatologist, and I went to see him immediately and learned that I had AS.

I have lived with AS for over 20 years. It has been a different disease for me from my father. My neck and thumbs are fused, not my spine, and I live daily with pain.

AS is a rarely known disease. Severe pain in the spine or neck may have a reason, and a rheumatologist is the best doctor to diagnose this little known disease.

I live by the motto, “If God brings me to “it,” He will bring me through “it,” whatever “it” is.”

My “it” has been Ankylosing Spondylitis.

Phoebe Donald Robinson can be reached by e–mail at