Welcome to RPforLife

RP Surgery and Ozone Therapy in Havana, Cuba

Welcome to RPforLife! I’m Emma, and I was diagnosed with Retinitis Pigmentosa in September 2014. My peripheral vision declined to 5 degrees just two years later. Looking for a way to slow my vision loss, we learned of a clinic in Havana, Cuba, that performs RP surgery to slow the progression of the disease. They also administer ozone and electrostimulation therapies to restore some peripheral vision.

We learned of the International Retinitis Pigmentosa Centre in September 2016 after seeing a documentary on Cuba on TV that highlighted the Centre. After a bit of research, we discovered that Cuba had been studying the effects of Retinitis Pigmentosa on their citizens and those from other countries for nearly 30 years. Doctors in Havana developed a surgery, that while not a cure, has proven to slow the progression of the disease.

I experienced much faster progression than my doctors in the United States expected — shrinking from 30 degrees to a mere 5 degrees of peripheral vision in just 2 years. As a family, we decided it would be worthwhile to fly to Cuba and explore the possibilities of RP surgery and therapy.

On January 8, 2017, we (me, my mom Valena, and my grandfather Keith) flew to Havana to stay for three weeks so I could receive ozone therapy and hopefully have eye surgery. After a week of rigorous testing, doctors determined that I was a good candidate for the surgery, and I did it! The doctors, nurses, and the entire staff at the clinic were incredible, and by the end of our visit, my peripheral vision had nearly doubled to 9 degrees.

One year later, my vision is stable and I’ve continued to do ozone therapy here in the states every six months to maintain my vision. I share my journey in more detail in my blog posts Living With RP, and I’d love to have you join me, especially if you or someone you love also has experience with Retinitis Pigmentosa, vision loss or blindness. Welcome!

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