These are a collection of personal stories of living with ichthyosis by our members. These stories feature many types of ichthyosis from a wide age range of people, including parents and individuals with ichthyosis. You may have seen some photos of people with ichthyosis, but here you can meet some of the families behind the photos. Read what it is really like to have a child with ichthyosis, or to live with the condition from the people who know.
Would you like to share your experience of living with ichthyosis? Please complete our form to tell us about your story (500 words approx) of living with ichthyosis. It may be featured in our e-bulletin, newsletter and on the website.
We know that by reading other people’s experiences of living with ichthyosis it can be reassuring and of comfort to others.
My name is Lesley and I was born in 1978 and live in Blairgowrie, Scotland. I was diagnosed with ichthyosis at birth and have Ichthyosis vulgaris (IV). Read more
Anna and is 15 years old. Since birth she has had Epidermolytic ichthyosis (EI), a rare genetic skin disorder affecting less than 1 in 100,000 and has no cure. There are over 28 different types of ichthyosis and they come in many forms, ranging from mildly dry skin to intense scaling, cracked, and thick skin. Read more
My name is Amber Brine and I live in Townsville, Queensland, Australia. I was born with Netherton Syndrome which is a form of ichthyosis. Read more
My name is Paige and I am 20 years old. This is my story. Ever since I was born the doctors were adamant that I had severe eczema despite my bright red blistering dry skin. Read more
My name is Chantell. I live in a small community in Fort Nelson B.C, not a very big town for sure but the people are friendly and we call it our home. Read more
I have just been diagnosed as having Ichythyosis X-Linked in the last few weeks. I am 46 years old man and have suffered since birth on my legs, arms and trunk. Read more
I am now 51 years old….just. I have had ichthyosis all my life. It is part of me and I live with it. It makes me unique. Sometimes it frightens me, because I and others do not know it is going... Read more
My name is Mai, I’m a 20-year-old student with many dreams and ambitions. As other sufferers of ichthyosis, I had been going through both physically and mentally difficulties. Read more
Our son was born 2 years ago with harlequin ichthyosis. We were told he would not live, we were shocked, devastated, free falling with fear, desperation, confusion. Read more
“Have you spent too long in the sun?”…. If I had a pound for every time I got asked that question I would be able to buy a small island in the sun. Read more
My name is Sarah I’m 33 yrs old (June 2013) I have Lamellar Ichthyosis (LI) and here’s my story. I do not know what age I realised I had a skin condition all I can remember... Read more
October 2012, 6 weeks to go until my due date. My fiancé Steve set off on a business trip to Washington DC. If it had been any closer he wouldn’t have gone, but a whole 6 weeks Read more