LHON And My Year And A Half Update! 3 Replies Rate this:Share this:TwitterFacebookLike this:Like Loading... Related
I’ll be that the reason Debinone (sp?) you mentioned is getting the notice of the FDA is that it is effective and not something that the big Pharma is getting the money from and they want it for themselves. Maybe we could get a petition started to put the pressure on the FDA to back off. I’ve seen websites like http://www.SignOn.org, Change.org and I’m sure that there are others. We could also raise a big stink on a Facebook page or ads.
I’m so glad you’ve made so many improvements and I couldn’t be happier for you. Also congratulations on being an uncle!!! You’ll be a wonderful uncle!
If you need another event, let me know and I will help just because that ‘s business. As I say in my business…because that’s its name.
Wishing you the Greatest of Days!!
My family also carries the LHON gene and my nephew lost his vision. I am always searching to find out how close they are getting with success and a cure. I have a couple questions after watching your latest video.
Do you know what is helping your recovery; idebenone or Dr Guys Research?
How is the clinical trial at Bascome Palmer going? Is it painful? You have to have shots into the eye, right? It looks so promising. DO you have any information on if this treatment may get out of the clinical trial stage and be avail. to others who have lost vision?
I hope your MRI results were good and the pain subsides.
I had heard that you can order Idebenone on-line from Canada. Could you continue to get it from there?
Thanks for any information you may be able to provided. God bless.
Sorry for the delay in replying.
I have no real scientific fact, but I feel the Idebenone with the supporting vitamins are helping me.
The clinical trial at Bascom Palmer has come to an end for phase 1. They are now going to choose a couple people from the study and inject them. They will be studied for a year or two and them decide how to proceed. I don’t know who or how they will choose who to give the first treatments to.
I have had two MRI’s now and the initial diagnosis was strinking optic nerves, so am waiting to see a neuro opthomologist and the results of my second MRI. I do not think this was good news but am trying to stay positive until we figure out what all this means. My eye pain is almost everyday now and would like to find the source of it and get rid of it.
I will post once I know something.