Thorvald Steen did not know he had an uncle with the same disease as him. In this interview, he talks about when he found out about having a genetic disease and how to cope.
Thorvald Steen was born in 1954, in Oslo, Norway. He grew up with his mother and grandmother. He didn’t know anything about his grandfather – a man who died many years prior to his birth – or his uncle.
Thorvald believed his mother was an only child, until one day, when he was 59 years old, and received a phone call from an unknown woman.
To dive deeper into his family history – and to try to explain what shame is – Thorvald has been writing several novels based on his own experiences with genetic illness and secrets.
In Part I of “The Inherited Shame”, the author talks about when he first found out about having inherited a genetic disease: Facioscapulohumeral. Watch it here:
In Part II of “The Inherited Shame”, Thorvald Steen talks about how to cope with having a genetic disease: how important it was to open up to close friends and how he was able to see his own strengths instead of limitations. Watch it here: