Oystein’s Story – written by his wife, Melisa

My husband Oystein was diagnosed with Stargardts about 2 years ago. We didn’t know anything about it, since most Scandinavian doctors have never heard of it themselves. Luckily after going through years of different eye doctors, someone at the Ullevål University Hospital in Oslo diagnosed it correctly.

He was at first depressed about the news, but little by little we have come to terms with it. His vision hasn’t deteriorated severly enough for him to lose his driving liscense yet (his doctor warned him that he is borderline now),but he has trouble reading, and cannot read subtitles on television or films, and is relying more and more on audio books.

His sister was diagnosed with Stargardts last year, and this was another blow to the family. Both Oystein and Heidi are overachievers (seems quite common in Stargardts sufferers), as he is a partner in a successful PR firm, and she is a government legal advisor on immigration issues, and they want to keep working as long as they can. Luckily we all live in central Oslo so we don’t need to be dependant on cars to get around.

We are currently looking into treatments in Cuba and the US. Any advice or support is welcome from around the world, especially if you can give us some ideas on how to live productive lives with low vision or new technology that can help those with low vision since Norway is not as advanced in aiding visually challenged individuals in the same way as my native USA.

Oystein’s e-mail: oysteinprivate@hotmail.com