Sandro

Of all the people I’ve met in my search for an answer to Retinitis Pigmentosa, only a handful come close to the amount of time and energy devoted by Sandro Pretolani. He tirelessly combs the internet for anything that might hold promise for RP patients — especially as it relates to advancements in western medicine, science and technology — and then shares his findings in a research-oriented group on Facebook.

What makes his commitment so extraordinary is that Sandro doesn’t have RP.  I recently asked him if he would discuss his commitment and thoughts on RP with all of us here.

IR: Thank you for sharing your thoughts with us, Sandro. Where do you live?

SP: I live in Italy, in a little town named Forlì, not far from Rimini.

IR: You are one of the most proactive people I’ve come across when it comes to finding an answer to RP. What drives you? And how much time do you spend each day researching answers?

 SP: What drives me? I love my brother, Renzo, too much to see his sight worsening year by year, so I have begun to search — first here in Italy, then all around the world – for any news I can find about research and therapy. I really wish to thank all the members and the coordinator of a Facebook group,  Retinitis Pigmentosa Research and Treatment. They made me understand I am not alone in the search and in the fight. With their questions, they obligate me to keep a “mental order” in my research, which is very important in my opinion. As for your second question, if I could, my search would be continuous. In reality, I am able to spend from one to four hours each evening researching.

IR: When was your brother diagnosed with RP? How old is he now?

 SP: My brother was diagnosed at 18, and now he is 46.

 IR:  Does anyone else in your family have RP? 

SP: Not to our knowledge.

Sandro’s brother, Renzo

IR: Of all the research you’ve done, what treatments or medical advances look most promising to you?

SP: This is not easy to answer – it depends on a lot of things. The more important is the stage of progress of the disease: for an initial and mild case, gene therapy can be really life-changing,with little effort. For most advanced cases, stem cells (eventually together with gene therapy, to save the remaining alive retinal cells) can be the way to restore lost vision. For people who will not be seeing in ten to twenty years (when it is hoped that gene therapy and stem cell treatments will be more advanced and readily accessible to RP patients), artificial retinas have to be preferred, keeping in mind the enormous development in this area and the advances that are expected over the next few years.

The acupuncture treatment is not easy to collocate inside this classification. We have a lot of positive testimonials about the therapy offered by Dr. Andy Rosenfarb in his clinic in New Jersey, but  also a lot of not so positive experiences around the world with other acupuncture practitioners. I think it is not viable–for a lot of reasons–to consider Dr.Rosenfarb’s treatment in New Jersey something that can be accessed by all of the sick people around the world. I hope he will be able to extend his experience to other practitioners outside of the United States.

IR: I know you’ve compiled a resource database. Can you provide us a link to that?

SP: With great pleasure. It is not “really” a database – it is only a Google Drive link to a shared folder named “retina”. I’ve divided it into two sections: “Latest News”, organized chronologically, and “Archive.” divided by the kind of research and the Institute or private company involved. For example, inside the folder archive you’ll find the folder “stem cells”, inside of which there are a lot of subfolders of different Universities or companies involved. To access,  Click HERE

 IR: Based on your research and experiences living with a brother who has RP, any advice you would give to those of us living with RP?

SP: It’s not easy to advise someone (and it can also sound false) to say, “Try to live as if all was normal.” But I think this is the essence. Yes, you have a disease, until now not curable, but you have also a great battle to fight–a purpose in life. Never, never, never give up on the hope that something could help you. With all the research, clinical trials and doctors focusing energies on this, I think that hope is one of the most potent “engines” of our life. Never lose your dignity and always remember that, for you, the life of every day is always a challenge – fight and win your challenges with grit and determination and be proud of it. And for those of us with a loved one suffering from RP, I think we need to help him/her in their inevitable moments of discouragement. It’s my dream that a day not so far from now, we will meet together and be the “ex” patients of RP. What a wonderful day that will be.

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