Rare Disease Day is today: Wednesday, February 28th 2018.
Children with an autoinflammatory disease like Juvenile Idiopathic Arthritis (JIA) have a rare disease. JIA occurs in about 1 in every 1,000 children – similar in frequency to Juvenile Diabetes. Although JIA is fairly rare, we in Ireland still battle for access to paediatric rheumatology care. The waiting list for those waiting to be seen by a paediatric rheumatologist stretches to over 800 children. That’s over 800 children in Ireland currently waiting in chronic pain. Children with rare diseases face isolation and misunderstanding and must battle these issues, along with their illness.
Have a look at this video of young people with rare autoinflammatory conditions sharing what it’s like living with a rare disease. Listen to them talk with their families about daily life, the emotional impact of their condition and the dreams they have for the future. Find out what being ‘rare’ means to them.
iCAN is a 100% volunteer, parent-led charity helping Irish children, teens & parents affected by Juvenile Idiopathic Arthritis and associated inflammatory conditions. www.icanireland.ie