Understanding a Rare Neurological Condition and the Importance of Inclusive Communities
What Is Stiff Person Syndrome (SPS)?
International Stiff Person Syndrome Awareness Day raises awareness of Stiff Person Syndrome (SPS), a rare neurological autoimmune disorder that affects approximately 1 to 2 individuals per million worldwide (National Institute of Neurological Disorders and Stroke [NINDS], 2023).
SPS causes severe muscle stiffness, painful spasms, and heightened sensitivity to stimuli such as noise, touch, or emotional stress. These symptoms may progressively worsen, making walking, standing, or maintaining balance increasingly difficult and significantly impacting an individual’s independence (National Organization for Rare Disorders [NORD], 2024).
Unlike many widely recognized neurological disorders, SPS is frequently misdiagnosed or undiagnosed for years. Because its symptoms may resemble those of other neurological or autoimmune conditions, individuals often experience a long and frustrating path toward diagnosis.
Increasing awareness is critical for improving early recognition, supporting research, and ensuring individuals receive the care and support they need.
Increased Public Awareness
Public awareness of Stiff Person Syndrome increased significantly in 2024 after internationally recognized singer Céline Dion publicly disclosed her diagnosis. Her openness helped bring global attention to this extremely rare condition and sparked broader conversations about invisible disabilities.
Although SPS affects a very small portion of the population, it highlights a larger challenge in disability awareness: many disabilities are not outwardly visible.
Conditions such as:
- Multiple Sclerosis
- Epilepsy
- Autoimmune disorders
- Diabetes
- Neurological conditions
may fluctuate in severity or present symptoms that are not immediately apparent to others.
Because of this, individuals living with these conditions often face misunderstanding, skepticism, or stigma when requesting workplace accommodations or using accessibility features such as accessible parking spaces or mobility aids.
Rare Diseases and the ADA
Under the Americans with Disabilities Act (ADA), protection is not determined by how common a medical diagnosis is. Instead, disability is defined broadly as a physical or mental impairment that substantially limits one or more major life activities (ADA National Network, 2023).
Major life activities may include:
- Walking
- Seeing
- Hearing
- Speaking
- Breathing
- Learning
- Working
The ADA Amendments Act further clarified that major bodily functions also qualify as major life activities. These include neurological, immune, digestive, respiratory, and normal cell growth functions (U.S. Department of Justice, 2023).
This intentionally broad definition ensures that individuals living with rare conditions, such as Stiff Person Syndrome, are protected under federal civil rights law if their condition significantly limits daily life.
Disabilities may be:
- Visible
- Invisible
- Temporary
- Progressive
- Episodic
The ADA recognizes all of these realities.
The Reality of Invisible Disabilities
For individuals living with SPS and other rare neurological conditions, challenges extend beyond medical symptoms.
Many encounter social barriers, including disbelief or criticism when using accessible features such as mobility aids, designated parking spaces, or workplace accommodations.
Because invisible disabilities are not immediately apparent, individuals may feel pressure to justify their need for accessibility. This can create additional emotional strain for people already managing complex health conditions.
Invisible disabilities are far more common than many realize. The Centers for Disease Control and Prevention estimates that more than one in four adults in the United States lives with some form of disability, many of which are not outwardly visible (CDC, 2023).
Recognizing invisible disabilities is essential for building inclusive communities where accessibility is treated as a civil right rather than a privilege.
Why This Day Matters to Accessibility Consulting Partners, Inc.
International Stiff Person Syndrome Awareness Day carries particular meaning for Accessibility Consulting Partners, Inc. (ACP).
One of ACP’s founders lives with Stiff Person Syndrome and other neurological conditions, providing firsthand understanding of the challenges individuals with rare and invisible disabilities may encounter when navigating public spaces and the built environment.
This lived experience reinforces an important reality: barriers in the built environment can either limit participation or enable independence.
Beyond raising awareness, this day also reinforces why accessibility work must remain grounded in real-world experiences. When accessibility professionals understand firsthand how barriers in the built environment affect mobility, independence, and daily participation, the importance of thoughtful planning becomes even clearer.
ACP’s Commitment to Accessibility
At Accessibility Consulting Partners, Inc., awareness initiatives such as this reinforce the importance of proactive accessibility planning.
Through services such as:
- ADA Self-Evaluations
- ADA Transition Plans
- Public right-of-way accessibility assessments
- Programmatic accessibility reviews
- Inclusive infrastructure planning
communities can identify and remove barriers that prevent individuals from fully participating in public life.
Accessibility planning, ADA Self-Evaluations, and Transition Plans help communities ensure individuals with visible and invisible disabilities can fully participate in public life.
Accessibility is not simply about meeting regulatory requirements.
It is about dignity, independence, and equal opportunity.
Communities that proactively address accessibility create environments where everyone, including individuals living with rare neurological conditions, can participate safely and meaningfully.
A Simple but Important Reminder
Disability is not always visible.
Respect and understanding matter.
Accessibility benefits everyone.
And awareness is where progress begins.