Guide for Working Adults with Ichthyosis

What to Do If Ichthyosis Is Affecting Your Career

1. Document challenges & needs
   • Note how symptoms affect tasks (typing pain, overheating, etc.)
   • Identify what helps you:
   • Examples:
     • “I need a fan at my workstation.”
     • “I may need short lotion breaks twice a day.”
2. Communicate with HR or Supervisor
   • You may say:
     • “I have a medical skin condition called ichthyosis. It affects temperature regulation and skin comfort. With small adjustments—like access to cooling and short moisturizing breaks—I can perform my job effectively.”
3. Request reasonable accommodations
   • Refer to disability laws if needed (ADA, EEOC, etc.)
4. Bring documentation if required
   • Medical letters can describe needs (not necessarily diagnoses)
5. Advocate for inclusion
   • If you face misunderstanding or discrimination, consider:
     • Internal HR support
     • Workplace disability/discrimination protections
     • Legal or patient-advocacy resources

Lessen the Impact Ichthyosis has on Your Career

1. Skincare Routine for the Workday
   • Morning Prep
     • Apply moisturizer/emollient before dressing.
     • Use ointments or creams with urea or lactic acid (if recommended by your provider).
     • Choose loose-fitting, breathable clothes (cotton preferred).
   • During the Day
     • Keep travel-size moisturizer at your desk or in your bag.
     • Reapply as needed to exposed areas (face, hands).
     • Use humidifiers if your office air is dry.
   • Evening Routine
     • Bathe or soak to soften skin, followed by exfoliation.
     • Reapply thicker ointments before bed.
2. Navigating the Workplace
   • Privacy and Comfort
     • Use cooling cloths or fans discreetly if overheating.
     • Consider fragrance-free wipes for comfort on-the-go.
     • Bring a spare shirt or moisturizer if flaking is an issue.
   • Communication Tips
     • You are not required to disclose your condition, but consider sharing with HR if you need accommodations.
     • Sample accommodations: flexible dress code, work-from-home days, or temperature/humidity controls.
3. Self-Advocacy & Legal Rights
   • ADA Protections
     • Ichthyosis may qualify as a disability under the Americans with Disabilities Act (ADA).
     • You have the right to reasonable accommodations (see link below).
   • 504 Plans (If in Higher Ed)
     • Adults pursuing education can request modifications similar to K–12 plans.
   • Insurance
     • Keep a list of medically necessary skincare products for FSA/HSA claims.
     • Track costs for potential tax deductions.
4. Mental & Emotional Wellness
   • Support Matters
     • Connect with peer communities like FIRST (Foundation for Ichthyosis & Related Skin Types).
       • FIRST Ichthyosis Adults
       • FIRST Ichthyosis Women
     • Don’t hesitate to seek therapy for stress, anxiety, or body image concerns.
   • Mental Health Resources for those with ichthyosis
   • Confidence Boosters

Reassurance for Employees

Helpful Links