This is my friend Adrienne Marie‘s Daughter Izzy . Like me she has a‪#‎raredisease‬. In honour of ‪#‎rarediseaseday‬ I would like to share a bit about Izzy and Adrienne Marie. Izzy suffers for ‪#‎Ed‬ or Epidermolysis Bullosa. A rare skin disease. Also known as Butterfly Disease. Like my PKU , it is a genetic disease.

Izzy has blisters that bleed;  all over her body and requires 24 hour care, daily dressing changes and even has a feeding tube. This is a lifelong disease. It is very painful and Izzy needs to wear special clothing to protect her skin.

Epidermolysis Bullosa (EB) is a group of genetic conditions, together affecting approximately 1 in 17-20,000 live births, with an estimated 500,000 people worldwide living with EB. The condition is always painful, frequently very disabling and life threatening and, in its most severe forms, fatal in infancy. EB affects both
genders and every race and ethnicity.