A recent study published in the Orphanet Journal of Rare Diseases indicates that for adults with congenital ichthyosis, skin severity and its impact on quality of life generally decrease over time due to more effective, personalised management routines. It highlights the need for proactive monitoring of long-term health, such as bone and cardiovascular care, but the research provides an encouraging outlook on managing the condition through adulthood. 

In this new paper, researchers from Cardiff University examined how the skin condition and associated medical conditions associated with five different ichthyosis subtypes changed across six life periods, and how the ichthyosis subtypes compared with one another at each period. Where changes with age were identified, reasons underlying these, and how they compared across ichthyosis subtypes, were also explored. The work provides new information on how symptoms associated with congenital ichthyoses change over time, and highlight the best intervention points for therapy and counselling for each subtype.  

Read the paper titled “A mixed-methods online survey approach using retrospective self-reporting to characterise congenital ichthyoses across age groups.”