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.
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
My name is Laura and I have a beautiful little boy called Mekhi who has Lamellar ichthyosis. I no longer say Mekhi ‘suffers’ from ichthyosis because... Read more
I’m 17 and I’ve just finished my first year of sixth form. I guess ichthyosis differs, I’ve heard about and met people with much more severe cases than myself. 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
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 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
My name is Jodie, I am 13 years old and I was born as a collodion baby. I don’t know what type, but I have ichthyosis. Read more
Myself and my sister were told from birth that we suffered from eczema, 21 years later, and after finally seeing a different doctor, it was suggested we had something else, EKV. Read more
My name is Wojciech Mistewicz. I have a son – 4 year old – Jacob Mistewicz, who suffers from Ichthyosis, probably it is EHK – bullous ichthyosiform erythroderma. Read more
After a beautiful pregnancy and 12 hours of labour my daughter was born at 6.50pm as soon as she was born I knew there was something wrong. Read more
My name is Wendy and I have lived with Ichthyosis vulgaris all my life. Within hours of being born my skin dried out and started peeling... Read more