My name is Henry, i am sharing my second birthday with ichthyosis awareness month and would like to raise money for a charity that has been very helpful in supporting me during my diagnosis and navigating my ichthyosis.
My family and friends are helping me to raise money by:
1. Taking part in a 5k walk around Burnley in fancy dress.
2. Holding a cake sale.
3. Doing a guess the name of the dinosaur teddy.
The Ichthyosis Support Group helps families and individuals living with a form of ichthyosis, a rare genetic skin condition.
Ichthyosis, pronounced Ick-thee-o-sis (which comes from the Greek word meaning ‘fish’) describes a group of conditions in which the skin is dry and scaly. Lots of people have dry skin conditions (such as eczema or psoriasis) but they tend to be patchy and they come and go. By contrast, in ichthyosis the scaling is continuous and usually affects the whole body. There is no cure for ichthyosis at present, but it is possible to manage the symptoms. The main aim of treatment is to improve the condition of the skin (make it less dry and less scaly, for example) and to relieve discomfort. Ichthyosis in the severe forms can be life threatening, but even in the milder forms a strict daily skin care regime is needed and having a visible skin condition can prove psychologically challenging. Thank you for supporting our fight. Demi-lea Adam