A new international study surveyed 222 adults with different types of congenital ichthyosis to better understand how living with ichthyosis changes from childhood through older adulthood. Instead of looking only at skin symptoms, researchers also explored mental health, mobility, overall health and concerns about the future.
What did researchers learn?
The study confirmed what many people in the ichthyosis community already know, ichthyosis affects much more than the skin. Participants said the condition impacted their daily lives at every age, especially during childhood and adolescence. However, many people also reported that the impact became easier to manage as they got older. This improvement was often linked to better treatments, improved skincare routines, growing self-confidence and learning how to manage their condition over time.
Skin symptoms often improve, but not for everyone
Many participants, particularly those with autosomal recessive congenital ichthyosis (ARCI) and epidermolytic ichthyosis (EI), reported that their skin became less severe with age. Better medications and more effective skincare were frequently credited for these improvements. People with X-linked ichthyosis (XLI), however, often reported that their skin symptoms stayed relatively stable throughout life.
Mental health remains an important concern
One of the strongest findings was the long-term emotional impact of ichthyosis. Many participants described bullying, embarrassment, anxiety, depression and social isolation, especially during their teenage years. While some people said they became more confident as adults, others continued to experience emotional challenges, including workplace discrimination and concerns about relationships. The study highlights the importance of mental health support alongside medical care.
Other health issues may become more noticeable with age
As participants grew older, some reported increasing challenges with:
• Joint pain, stiffness, and bone health
• Mobility and physical activity
• Regulating body temperature, especially overheating because of reduced sweating
• Autoimmune-related symptoms in some individuals
• General age-related health concerns such as high cholesterol, diabetes and high blood pressure
The researchers also found some encouraging news. Across all ichthyosis types, heart health and metabolic health were generally reported as fair to good, suggesting these areas were not major concerns for most participants.
What were people most worried about?
When asked about the future, participants said their greatest concerns were:
• Their skin condition getting worse
• Developing additional health problems related to ichthyosis
• Access to knowledgeable healthcare providers
• Losing support from caregivers or family members as they age
These findings emphasize the need for lifelong medical care, emotional support, and continued research into better treatments.
Why this study matters
This is one of the first studies to look at how ichthyosis affects people across every stage of life, rather than focusing on a single age group. The results provide valuable information that can help healthcare providers anticipate patients’ changing needs, improve counseling for families, and identify the best times to introduce treatments and support services.
Perhaps most importantly, the study reinforces that while many people develop effective ways to manage ichthyosis over time, the condition remains a lifelong journey that affects both physical and emotional health.
https://link.springer.com/article/10.1186/s13023-026-04358-7
