Living with rare disease
Mirna Morić with her son Maksim
"You just have to live day by day," says Mirna Morić, a Medis Adria employee. Her son Maksim was diagnosed at birth with recessive dystrophic epidermolysis bullosa, a very painful and incurable skin disease which affects both skin and internal organs.
"As soon as my son was born, both his legs from knees down were affected and in wounds. For me as a parent, the worst is that I have a child who is in pain twenty-four hours a day, and they cannot help him." Mirna finds her strength in family and their support. Her advice to mothers with children with a rare disease is not to compare themselves with others.
Today is the International Rare Disease Day. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases. Less than 5% have approved treatment options available.
In Medis we take every rare disease personally. Thank you Mirna for sharing your life story with us!