10 Facts About Ankylosing Spondylitisby Lene Andersen, MSW Patient Advocate
Ankylosing spondylitis is pronounced ank-kih-low-sing spon-dill-eye-tiss. It is often referred to simply as AS. Ankylosis means “fusion” and spondylitis means “inflammation of the spine.” Here are the basic facts about this form of chronic immune-mediated inflammatory disease.
What is AS?
In immune-mediated inflammatory diseases, the immune system malfunctions and attacks healthy tissue. AS primarily affects the spine, causing inflammation of the vertebrae and spinal joints, such as the sacroiliac (SI) joint located where the spine connects to the pelvis. AS can also affect other joints in the body, as well as the eyes, and internal organs.
Genetics play a role in AS, particularly the HLA-B27 gene. Many people have this gene, but only 1-5 percent of those develop AS. The current theory is that an environmental trigger, e.g., a bacterial infection, starts the immune response leading to the development of AS in those who are susceptible.
AS typically develops between the ages of 17 and 45, although it can also happen at other ages. The first symptoms usually start in the sacroiliac joint. You may feel lower back pain that comes and goes, as well as pain and stiffness in the morning or after a period of inactivity. Other symptoms include pain and stiffness in other parts of the body, especially the Achilles tendon, the outside of the hips, and along the breastbone.
It can be difficult to diagnose AS and many people live with a mild form of the disease for years without knowing it. An in-depth discussion with your doctor about your symptoms, as well as a physical exam, testing inflammation markers in the blood (CRP and ESR), and imaging tests, can lead to a diagnosis.
Like many other types of inflammatory arthritis, AS can cause severe, chronic pain in the affected areas of the body. In very advanced cases, the disease can cause new bone formation, essentially fusing the spine. Sometimes this fusion results in a forward stooped posture called kyphosis.
At this time, there is no cure for AS. However, medications can suppress the disease and manage pain. Early treatment is key to keeping mobility and limiting the damage that inflammation can cause. Treating AS involves both anti-inflammatory medications and disease modifying drugs. People react differently to medication, and it may take some time to find a medication that works for you.
Managing AS isn’t just about medication. A number of other things can help, too. Physiotherapy and exercise can help you stay mobile. Occupational therapy can help offer tools to function in your daily life. Healthy eating makes your general health better, and relaxation techniques, such as meditation and mindfulness, can help you deal with stress and cope better.
Surgery may be an option for those who have severe, advanced AS. Joint replacements in the hips or knees can bring relief to damaged joints. After joint replacement, you can expect less pain, better movement, and better function. Surgery on the spine is reserved for people who have a severe spinal deformity, as this type of surgery is very complicated.
The most common complication of AS is fusion of the spine. It can also cause fusion in your rib cage, potentially affecting your lung function. Other potential complications include uveitis (an inflammation of the eye, causing pain, blurred vision, and sensitivity to light), iritis (and inflammation that affects the colored ring around your eye's pupil(s)), and compression fractures in the spine. Inflammation of AS can also affect the aorta, enlarging it and affecting heart function.
You may wish to get counselling, especially in the beginning to help you adjust to having a chronic illness. Living with a chronic illness is easier when you have support from family and friends and from other people living with the same disease. Look for in-person support groups or online groups of people with AS.