Can people with Scleroderma work? What kind of work can they perform?

Many individuals living with Scleroderma maintain successful, fulfilling careers by tailoring their work environment and responsibilities to accommodate the specific physical challenges of their condition.

Assessing Work Capacity

Whether a person with Scleroderma can work depends heavily on the extent of systemic involvement, specifically regarding fatigue, joint mobility, and Raynaud’s phenomenon. Because Scleroderma is a spectrum disease, clinical presentation varies widely; some individuals manage mild skin involvement, while others navigate significant organ involvement or chronic pain that requires more frequent rest intervals.

Choosing Manageable Work Environments

Positions that allow for environmental control are often most sustainable. For those with Raynaud’s, roles in temperature-controlled offices are preferable to outdoor or cold-storage work. Knowledge-based roles, creative pursuits, and administrative positions that leverage technology often allow for the flexibility needed to manage Scleroderma symptoms effectively. Many members of our DiseaseMaps community have found success in remote work, which eliminates the physical toll of commuting and allows for a customized, ergonomic workspace.

Workplace Accommodations and Legal Rights

Under laws like the Americans with Disabilities Act (ADA) in the U.S. (and similar equality acts internationally), employees are often entitled to "reasonable accommodations." Effective adjustments include:

• Flexible start/end times to account for morning stiffness.


• Ergonomic keyboards or voice-to-text software for those with hand involvement.


• Remote work options to manage energy levels and fatigue.


• Scheduled breaks for movement or temperature management.

Empowerment through Adaptation

We have seen countless patients thrive by prioritizing self-advocacy and pacing. By viewing your career through the lens of long-term sustainability rather than immediate output, you can cultivate a professional life that aligns with your health needs. Focus on your expertise and professional value, and remember that Scleroderma is only one part of your multifaceted identity.

Medical Disclaimer: This information is for educational purposes only and does not constitute medical advice. Please consult with your rheumatologist or healthcare team to discuss how your specific symptoms impact your ability to perform certain work tasks.

References

• NIH Genetic and Rare Diseases Information Center (GARD)


• Scleroderma Foundation


• Orphanet: Rare Disease Database