Rare Disease Spotlight Series: Ankylosing Spondylitis

Ankylosing Spondylitis (AS) is one of several conditions in the family of rheumatic diseases that primarily impact the spine. It is an inflammatory condition that can lead to bone spurs or joints in the vertebrae fusing. In severe cases the inflammation, pain, and stiffness also impact hips and shoulders. Cartilage, tendons, the eyes, or even the heart and lungs can be victims of this damaging disorder. There is no cure, but some treatment options exist to manage symptoms and slow the harm AS eventually does to the body.

Ankylosing Spondylitis

Symptoms of Ankylosing Spondylitis

Pain in the lower back or joints that begins as a dull ache but worsens and widens quickly is usually the first indication of AS. As the condition progresses, the pain spreads to more areas of the body, affecting primarily the lower back, hips, and pelvis. This pain typically becomes chronic. Fatigue and anemia can also occur.

Some sufferers have mobility issues related to the pain and progression of arthritis. Many people with AS also have co-occurring conditions such as IBS, Crohns or Colitis, mental health disorders, other rheumatic diseases, and heart problems.

A member of our Unchargeables community described reduced reactive time as well as cognitive dysfunction brought on by fatigue and painsomnia. Levels of activity, particularly those which include physical touch, must be carefully monitored and modified. Some people with AS may become confined to home.

Ankylosing Spondylitis hoodie for sale at The Unchargeables shop.

​​​​Diagnosis and Treatment of Ankylosing Spondylitis

According to the Spondylitis Association of America, the average age of onset is between 17 and 45. Additionally, AS primarily impacts men. A rheumatologist is the specialist most likely to make a diagnosis of Ankylosing Spondylitis. There seems to be evidence of a genetic component so knowing your family history can help. A physical exam, including medical history, and imaging tests are routine in the diagnostic process. While the Mayo Clinic lists AS as common (more than 200,000 cases per year in the United States), it is not commonly known.

Treatment options include medications, home remedies, lifestyle modifications, alternative therapies, and surgery. Always talk to your doctor to develop a complete plan. The Mayo Clinic and the Spondylitis Association of America recommend a multipronged approach.

Medications that reduce inflammation or pain help many with AS. If that is not enough, some patients qualify for biologic medications. These are usually given as an injection or through IV fluids.

Home remedies such as heat and ice are also safe. They are often recommended as a first step or used to compliment other treatments.

Lifestyle modifications include diets known to reduce inflammation, regular exercise, and stress management.

Alternative therapies such as meditation and acupuncture are often tried. However, patients should be careful before agreeing to any spinal manipulation. Therapies including physical therapy, occupational therapy, and postural therapy are recommended as well as cognitive behavioral therapy.

Ankylosing Spondylitis
​​​How do I know if I have Ankylosing Spondylitis? Is it genetic?

Only a doctor can diagnose Ankylosing Spondylitis. If you think you might have it, setting up an appointment with a rheumatologist is the first step. One female member of the Unchargeables community experienced a delay in diagnosis of over a decade, possibly due to her gender (recall AS primarily affects men), so self-advocacy is crucial. Currently no blood test can positively identify AS. However, certain inflammatory markers can be used to help the doctor rule out other conditions or point toward a diagnosis of AS.

There does seem to be a genetic predisposition to AS. Testing for the gene HLA-B27 has been used. However, this test alone is not reliable as many carriers of the gene do not have the disease.

For more information on this rare disease, visit www.spondylitis.org.

For a patient perspective from members of our community interviewed for this article, please check out www.beingcharis.com or follow @JediMaster941 on Twitter.

For more support:

If you’ve already been diagnosed with Ankylosing Spondylitis and are looking for more support, you are welcome to join the hundreds of other Chargies (our alternative term for Spoonies derived from the Battery Analogy) on our Facebook support group, The Unchargeables! We’re also on Instagram and Twitter. We’re a community open to all chronic illness warriors including those with rare diseases and those who have yet to be diagnosed.
Also, check out our Ankylosing Spondylitis section in the shop for great gear to help you represent and raise awareness.

About Author T.J. Madden:

T.J. Madden writes about Ankylosing Spondylitis for The Unchargeables Reader, Writer, Baker, Teacher, Chicken Soup Maker, Fighter for all things Healthier, Stronger, Kinder, and Better than yesterday.

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