To pronounce “ankylosing,” divide it into three syllables: “an-kyl-os-ing.” Accentuate the second syllable by pronouncing the “ky” as in “kite” and then follow with an “l.” Emphasize the “os” as in “loss,” and finally, pronounce the “ing” with a short “i.” The full pronunciation of “ankylosing spondylitis” is “an-kyl-os-ing spon-dill-eye-tis.”
What is Ankylosing Spondylitis?
Ankylosing spondylitis is a chronic inflammatory condition that primarily affects the spine. It is characterized by inflammation of the joints between the vertebrae (bones of the spine) and the sacroiliac joints (joints between the pelvis and spine). Over time, this inflammation can lead to the fusion of these joints, resulting in a hunched posture and reduced mobility.
The symptoms of ankylosing spondylitis can vary depending on the severity of the condition. Common symptoms include:
- Pain and stiffness in the lower back and buttocks, especially in the morning or after periods of inactivity
- Pain and stiffness in the neck, shoulders, and hips
- Fatigue
- Loss of appetite
- Eye inflammation (uveitis)
The exact cause of ankylosing spondylitis is unknown, but it is thought to be an autoimmune disorder, in which the body’s immune system mistakenly attacks its own tissues. There is a strong genetic component to the condition, with about 90% of people with ankylosing spondylitis carrying the human leukocyte antigen (HLA-B27) gene. However, not everyone who carries this gene will develop the condition.
Ankylosing spondylitis is a lifelong condition, but with proper treatment, most people can manage their symptoms and live full and active lives. Treatment typically involves medication to reduce inflammation, physical therapy to improve mobility, and lifestyle changes to reduce pain and stiffness.
Types of Axial Spondyloarthritis
Understanding the Spectrum of Axial Spondyloarthritis
Axial spondyloarthritis (axSpA) is an umbrella term encompassing inflammatory diseases that primarily affect the joints of the spine. Among these conditions, ankylosing spondylitis (AS) and non-radiographic axial spondyloarthritis (nr-axSpA) represent distinct subtypes.
Non-Radiographic Axial Spondyloarthritis (nr-axSpA)
Nr-axSpA, as the name suggests, is characterized by the absence of visible changes on conventional X-rays. Despite this, individuals with nr-axSpA experience inflammation and pain in the spine and sacroiliac joints, which connect the pelvis to the spine. Back pain, particularly in the lower back or buttocks, is a common symptom. It often occurs in the morning or after periods of inactivity, and can improve with movement.
Radiographic Axial Spondyloarthritis (r-axSpA)
In r-axSpA, X-rays reveal evidence of inflammation and damage in the spine, most commonly in the sacroiliac joints. As the disease progresses, it can lead to the formation of new bone in the spine, a process known as ankylosis. This can result in stiffness and reduced mobility in the spine.
Distinguishing Between Nr-axSpA and R-axSpA
While both nr-axSpA and r-axSpA share similar symptoms, there are key differences to consider:
- Imaging: X-rays are typically used to differentiate between the two types. R-axSpA shows visible changes on X-rays, while nr-axSpA does not.
- Disease Progression: R-axSpA is generally more progressive than nr-axSpA. It tends to cause more pronounced stiffness and structural changes in the spine over time.
- Treatment: The treatment approach for nr-axSpA and r-axSpA may vary depending on the severity of the disease and the presence of specific symptoms.
Measuring Disease Activity and Quality of Life in Ankylosing Spondylitis
Understanding Disease Activity with the BASDAI
The Bath Ankylosing Spondylitis Disease Activity Index (BASDAI) is a tool used to assess the severity of AS symptoms. It asks patients to rate their pain, stiffness, fatigue, and other symptoms on a scale of 0 to 10. These ratings are then used to calculate a total score, reflecting the current disease activity.
Measuring Quality of Life with the ASQoL
Alongside disease activity, it’s crucial to assess the broader impact of AS on an individual’s life. The Ankylosing Spondylitis Quality of Life (ASQoL) questionnaire delves into physical, emotional, and social well-being. It helps clinicians understand how AS affects daily activities, relationships, and overall happiness.
Why It Matters
Tracking disease activity and quality of life is essential in managing AS. It allows healthcare providers to tailor treatment plans to each patient’s needs, monitor progress, and identify areas where additional support may be required. By assessing both the objective symptoms and subjective experiences of AS, comprehensive care can be provided, empowering individuals to live fulfilling lives despite their condition.
Organizations and Support for Individuals with Ankylosing Spondylitis
Living with ankylosing spondylitis can be challenging, but you are not alone. Many organizations and initiatives exist to provide support and resources to individuals affected by this condition.
One of the leading organizations in the field is the Spondylitis Association of America (SAA). Established in 1983, the SAA is a non-profit organization dedicated to improving the lives of those living with spondyloarthritis, including ankylosing spondylitis.
The SAA offers a wide range of resources and services, including:
- Educational materials: The SAA provides comprehensive information on ankylosing spondylitis and related conditions, including symptoms, diagnosis, treatment, and research.
- Support groups: The SAA hosts local and online support groups where individuals can connect with others who understand their experiences.
- Advocacy: The SAA advocates for increased research funding, improved access to care, and policies that support the well-being of individuals with ankylosing spondylitis.
In addition to the SAA, there are other organizations that provide support and resources for individuals with ankylosing spondylitis:
- The Axial Spondyloarthritis International Federation (ASIF) is a global organization that brings together patient organizations from around the world to advocate for improved care and support for individuals with axial spondyloarthritis, including ankylosing spondylitis.
- The Spondylitis Association of Canada (SAC) provides support, education, and advocacy for individuals with ankylosing spondylitis and related conditions in Canada.
These organizations offer a lifeline of support and resources to individuals affected by ankylosing spondylitis. By connecting with these organizations, you can gain access to valuable information, support, and advocacy that can make a significant difference in your journey.
Correct Pronunciation and Additional Resources
To understand ankylosing spondylitis thoroughly, it’s crucial to pronounce the terms correctly. “Ankylosing spondylitis” is pronounced as “ang-key-low-sing spon-di-lie-tis,” while “spondylitis” is pronounced as “spon-di-lie-tis.”
Additional Resources for Support and Information:
The Spondylitis Association of America (SAA) is a renowned organization that provides invaluable support and resources to individuals living with ankylosing spondylitis. The SAA offers a wealth of educational materials, support groups, and advocacy efforts to empower individuals in their journey.
Other notable organizations include:
- The Arthritis Foundation: Provides comprehensive information, support programs, and research updates on ankylosing spondylitis.
- The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS): Conducts research and provides resources on various rheumatic diseases, including ankylosing spondylitis.
- The AS Mission: A patient-centered organization dedicated to supporting research, education, and advocacy for individuals with ankylosing spondylitis.
These organizations offer a lifeline of support, connecting individuals with others facing similar challenges. They provide essential resources, empower patients, and advocate for improved treatments and care.
