The Ichthyosis Support Group (ISG) is the only organisation supporting individuals, families and health professionals affected by Ichthyosis, a rare genetic condition affecting our largest organ, the skin.
Sufferers have to follow a rigorous daily routine of scrubbing to remove the build up of skin to prevent infections, and then apply thick, greasy creams to prevent dryness and cracking which, if left untreated, can become so severe that it breaks the bones of the fingers and toes.
In 2012, medical professionals in the north west of England contacted ISG to report a lack of awareness and support for Ichthyosis sufferers in the area. National Lottery funding of £9,650 enabled the group to hold a family fun day at Old Trafford in Manchester where families attended formal workshops and lectures about the condition and how to treat it.
12-year-old Jodie was diagnosed with Ichthyosis at birth. Due to limited information and a lack of awareness of her condition among medical professionals in her area, Jodie had not been receiving the right type of care. Jodie and her parents were thrilled with the information and support on offer at the event. Jodie’s parents said: “We learned more in a few hours than we have in 12 years! Our day with the ISG changed our lives and answered so many questions for us, we’re very grateful.”