Category: stories

Sarah was four when she started passing blood in her urine. Nobody could have imagined that it was Alport syndrome. Doctors first suspected another kidney condition. It was only four years later, when genetic testing became available, that Sarah and her family finally had an answer. Sarah had autosomal recessive Alport syndrome caused by changes…

My name is Zahra and today I want to share the story of my son Kamran with you. The beginning of the journey Kamran was six when we first went to A&E. He had been complaining of stomach pain for a while – the kind you hope is just a bug or something that will…