Meet Jeff G. – Australia

As Ichthyosis Awareness Month (May) came to a close, I wanted to share a few words about my skin condition, lamellar ichthyosis, and where I am today.

Lamellar ichthyosis is a rare genetic skin condition affecting approximately 1 in 300,000 to 600,000 people worldwide. It is one of the five major forms of ichthyosis and sits toward the more severe end of the spectrum.

The word “ichthyosis” comes from the Greek word ichthys, meaning “fish”, while “lamellar” means “plate-like”. In simple terms, it causes the skin to develop thick, plate-like scales. Growing up, this made me stand out in ways I didn’t always appreciate, and like many people with visible differences, I experienced my share of unkind comments and nicknames.

However, lamellar ichthyosis is much more than a skin condition. It affects my body’s ability to regulate temperature, impacts my hearing and vision, increases the risk of infections, and means that many everyday activities require extra planning and effort.

What has made the greatest difference throughout my life has been the support of family, friends, mentors and colleagues who encouraged me to focus on possibilities rather than limitations. Their support helped me pursue sport, enjoy the outdoors, serve my community, take on leadership roles, and embrace opportunities that others may have thought impossible.

Over the years, I’ve come to see ichthyosis as more than just a challenge. It has shaped who I am and taught me resilience, perspective, determination and gratitude. While I would never have chosen this path, it has given me experiences, relationships and lessons that I may never have found otherwise.

Tonight, as I write this post, the realities of living with lamellar ichthyosis feel more challenging than usual. My skin is quite sore and I have had significant vision issues over the past month, but I face these challenges with gratitude for the people around me and confidence in the person ichthyosis has helped me become.