Annabelle's story ichthyosis - Ichthyosis Support Group Jeans for Genes

Annabelle's story

Six-year-old Annabelle has a rare genetic skin condition called ichthyosis, which requires her skin to be creamed and bandaged several times a day.

When Annabelle was born, her mum Sonia remembers the delivery suite going very quiet. She knew something was not quite right. Annabelle was covered in a membrane that cased her body, squashing her ears, nose, hands and feet.

At first, Sonia’s mum and dad had to cream and bandage Annabelle every hour, day and night. Eventually, the membrane casing fell away and they were able to see Annabelle’s beautiful big eyes and lovely little ears for the first time.

Whereas children with normal skin will shed a layer of skin every 23 days, Annabelle can shed a layer of skin in 24 hours.

Now, they cream and bandage her skin four times every day to prevent it from cracking and getting infected. It can be difficult for her parents seeing other people’s reactions to Annabelle the first time they meet her, but family and friends have been very supportive and Annabelle’s school has a special room where she can be creamed during the school day.

With the assistance of the Ichthyosis Support Group, a national conference has been organised to enable families affected by ichthyosis to get together and learn about new treatments from doctors and geneticists. Which means Annabelle can meet other children just like her.