NRK Asia correspondent reveals rare disease diagnosis after years of secrecy

Philip Lote, a veteran NRK foreign correspondent, has disclosed his battle with hereditary spastic paraparesis (HSP), a rare neurological disorder, after keeping it private for four years, Dagbladet reports.

Speaking to the newspaper in Oslo this week, Lote said he has received “an enormous number of positive reactions” since publicly discussing his condition in Aftenposten’s A-magasinet and NRK’s Urix program. “I’ve gotten a lot of support, care, and advice. It’s deeply moving,” he said, estimating nearly a thousand messages from both acquaintances and strangers.

The 54-year-old, currently based in Beijing as NRK’s Asia correspondent, first noticed symptoms in 2019—leg twitches, stiffness, and disrupted sleep—but initially dismissed them as tendonitis or a strain. He was diagnosed with HSP in 2022. The progressive disorder causes muscle stiffness and weakness, primarily affecting mobility, though it does not shorten life expectancy. Around 500–600 Norwegians live with the incurable condition, according to the Norwegian Health Informatics (NHI).

Lote told Dagbladet the outpouring of support had exceeded his expectations, with no negative responses. Several individuals with HSP or their relatives contacted him, expressing gratitude for raising awareness of the little-known disease. “They say it will now be easier for them to be open and help others understand,” he noted.

While the response has been overwhelmingly positive, Lote admitted the emotional toll of processing so many messages. “It’s wonderful but also exhausting. I can’t reply to everyone,” he said. His family, too, has found it easier to discuss his condition openly since his public disclosure.

Despite the challenges, Lote intends to continue working as long as possible, though he acknowledged concerns about the future. HSP has no cure, and treatment focuses on managing symptoms through physiotherapy and supportive care.