What hope is on the horizon for Retinitis Pigmentosa?

[barbara8851]

Daughter (18 y.o.) diagnosed three years ago w/Retinitis Pigmentosa. what new research is on the horizon for this disease? Our UVA doctor has referred us to Dr. Samuel Jacobson at Scheie Eye Institute. Does anyone know this doctor? He seems to have made a mark in the retinal field.  I would love to hear some positive thoughts about this disease.  It would be helpful to look positively at my daughter's future.  I'll be happy with any news you offer!  Thanks. Barbara

[Michael J Kutryb, MD]

By the way - Scheie is a top notch program - I've been there before.  Don't know your doctor  however.  Sure he must be excellent though.

[Michael J Kutryb, MD]

RIght now it seems that gene therepy is the most promising treatment on the horizon.  You need to go to blindness.org to keep up to date on the latest clinical trials and up to date information regarding RP.  It is called the Foundation for Fighting Blindness and you may want to consider being a volunteer.  There are going to be some excellent advances in the future.  In the meantime, please understand that a diagnosis of RP definitely does NOT equal blindness.  You can lead a very functional life - just perhaps not a major league baseball player or jet fighter pilot - but you never know.

MJK MD