A BBC reporter goes undercover and confronts doctors offering bogus treatments for his genetic condition.
More than two million people worldwide have retinitis pigmentosa, but for most of them there is no treatmentDoctors around the world are offering false hope and bogus treatments to millions of people with an incurable condition that can lead to blindness. BBC reporter Ramadan Younes, who has the disease himself, went undercover to expose them.
When I returned to my home in Cairo, Egypt, I told friends and family that my sight was improving - but it wasn't true. Nothing had changed. In Gaza I met people living in refugee camps who had gathered thousands of dollars from friends and family to be treated with injections of glucose and vitamins, along with vibrating massage devices.
But unlike most trials in the US, which are funded by the government or private drug and medical device companies, in this case patients have to pay $20,000 to take part. But former patients told me a different story. One, named Ahmed Farouki, said that after the procedure he found he could no longer see with his left eye.
It lists more than 400,000 trials and, in most cases, there is no way to tell what is regulated, and what is not. Dr Byron Lam from the Bascom Palmer Eye Institute in Miami described Dr Levy's claims as "really crazy" and said he did not believe there was "any scientific validity" to the idea that injecting bone marrow stem cells would help the condition.
After I revealed to Dr Levy I was a journalist investigating this treatment and requested an interview with Dr Weiss, he wrote back and said I was a sham."You are a disgrace to your family, and to millions of people suffering from untreatable eye disease from across the world.I wondered how all of this was possible in a highly regulated country such as the US, especially as there is evidence of concerns about the two doctors' methods.
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