Haley Stubbs

Hello!

My name is Haley and I have retinitis pigmentosa. I recently learned I am eligible for Luxturna, the only FDA approved cure for retinitis pigmentosa. Only a very small percentage of people with RP are eligible for Luxturna because you must have biallelic recessive mutations in a gene known as RPE65. While I won a bad luck lottery in inheriting retinitis pigmentosa, I also won the good luck lottery in being eligible for this therapeutic. Luxturna was approved in 2017. Since then, over 400 eyes have been treated (a little over 200 people). Receiving Luxturna is a very unique experience; one I wanted to document here for myself and anyone else who is considering treatment, or is just curious. Luxturna was the first FDA approved gene therapy. Today, there are 36, and I have no doubt this number will continue to rise. While the treatment for every gene therapy and individual patient is different, I hope that my story will resonate with someone out there.