Meet our Ichthyosis Heroes
Learn about life with ichthyosis through stories and images from our ichthyosis heroes, sharing their experiences of daily life.
Our Ichthyosis Heroes
Meet An, Living with Lamellar Ichthyosis
Living with ichthyosis is about much more than what can be seen on the skin.
For many, the day begins with a routine that has been repeated thousands of times before: bathing, removing excess scale, applying creams and emollients, caring for cracks or irritated areas, and choosing clothes that will be comfortable against the skin. Depending on the type and severity of ichthyosis, this can take a significant amount of time—and the routine often needs to be repeated throughout the day.
The treatment helps manage the symptoms, but it does not make the condition disappear. The skin continues to renew itself differently, which means that much of yesterday's work begins again today.
Life With Ichthyosis
Meet Henric, Living with Lamellar Ichthyosis
For children, these routines become part of growing up. Parents often take responsibility for hours of skin care before a child gradually learns to manage more of it independently. What other families may take for granted—a quick morning before school, an afternoon at the beach, or simply going to bed—can require additional planning.
And some of the greatest challenges are not always visible.
In several forms of ichthyosis, sweating is reduced or severely impaired. Because sweating is one of the body's main ways of releasing heat, exercise and warm weather can become difficult or, in severe circumstances, dangerous. Playing sports, travelling, spending a summer day outside, or simply walking in the heat may require frequent breaks, cooling, water, shade and careful awareness of the body's temperature.
Meet Pavo, Living with Lamellar Ichthyosis
The skin itself also performs one of the body's most important jobs: forming a barrier between us and the outside world. In ichthyosis, this barrier does not function normally. Depending on the condition, this can contribute to painful cracking, irritation, increased water loss and susceptibility to skin infections.
Then there are the challenges that cannot be measured by looking at the skin.
Ichthyosis is visible, and looking different can attract questions, staring and sometimes misunderstanding. Children may have to explain their skin before they are old enough to fully understand it themselves. For some, these experiences can affect confidence, relationships and participation in everyday activities.
Yet ichthyosis does not define the person living with it.
People with ichthyosis go to school, build careers, play sports, travel, form relationships and pursue the same ambitions as anyone else. Behind these ordinary moments, however, there can be an extraordinary amount of daily work that most people never see.
Today, treatment remains largely focused on managing symptoms with Emollients, bathing routines and retinoids. Yet even these treatments are not equally accessible. In many parts of the world, families struggle to obtain or afford the medicines and specialized care needed to manage ichthyosis.
This is why The ARCI Initiative was founded: to help make effective treatments accessible to everyone, regardless of where they live, while supporting research toward something greater — a future where we can treat ichthyosis at its cause and, ultimately, cure it once and for all.
The same disease. A very different reality.
Where medicines and specialist care are limited, the burden of ichthyosis can become much greater.
Learn more about underserved communities on Millat Sahara Foundation Website.
Your contribution can make a difference.
Every donation brings us closer to better treatments and, ultimately, a cure for ichthyosis. Your support helps advance promising research and initiatives that improve the lives of people living with ichthyosis today.