The Ichthyosis Support Group (ISG) helps families and individuals living with a form of ichthyosis, a rare genetic skin condition and this year they want to raise £25,000 to fund more research and improve the lives of those living with this condition.
My wife Mandy has a rare form of this condition and she is only approximately 1 in 300,000 people with her type. It has meant she has spent time in hospital extremely unwell. Skin is the largest organ of the body, and the impact of skin conditions both physically and psychologically, can have a huge impact on the life of the person with the condition and their loved ones. Skin conditions are often misunderstood and the potential severity of them is highly underestimated. Mandy is one of the oldest survivors of her condition and babies born with it can still die, due to a failure to thrive, infection and other complications.
The ISG funds research, provides a support network for individuals and families and raises awareness of this 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, lifelong 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.

Tony Easton