Hope for me

[Tomahawk674]

As you may or may not know, I am someone who loves flying, but as I have told many before, I can't get a licence due to having vision problems that stopped me getting a medical.

What I have not sared with many is that I actually have an eye condition that leads to blindness, called Retinitis Pigmentosa:

http://www.blindness.org/content.asp?id=45

There is no cure or form of treatment for the desease. In my case, I still see enough to function more or less normally (in the daylight), read a little, and walk on my own, although I gave up driving years ago, and of course, never tried to fly without a CFI. (Yes I do warn them about my vision).

However, as of April 28th, it was published that there have been successful trials of gene therapy:

http://www.dailymail.co.uk/pages/li...ain.html?in_article_id=564194&in_page_id=1774

Which could possibly stop the advance of my disease, and better yet, give me back normal vision. Here is the video the "before and after" obstacle test of the mentioned subject in the article:

http://www.youtube.com/watch?v=d_YJZn-ft_Q&feature=related

http://www.youtube.com/watch?v=K9HvnRJT-8A

If this form of treatment proves to be successful, it will be one of the biggest life changing events for me and many others (including my sister, who shares the condition).

I can only wait...

 

[TMetzinger]

Boy, I hope that (A) you can avail yourself of this therapy, and (B) that it does the trick for you and (C) that the FAA will accept it. We really do seem to be seeing some amazing fruit coming out of long-running medical research.

I read this weekend about non-obese type I diabetics being "cured" by a surgical technique involving resectioning the small intestine, resulting in normal sugar control almost immediately. While I admit that it's early days, I was disheartened to hear the president-elect of the American Diabetes Association saying that he didn't "like" the notion that diabetes could be cured surgically - if you're president of an organization dedicated to the eradication of a disease, I don't think you should only accept cures you "like" - if surgery is a real and permanent cure (and it's early days, so nobody knows yet), take it and be grateful!

I wish you the best in your quest for a cure or therapy.

 

[KennyFlys]

Jav, I hope you get the chance. I know what passion you have for flying.

As for the ADA president-elect, the guy is an idiot. What else is he opposed to that would assist people restoring full use of their faculties?

 

[gprellwitz]

Jav, having flown with you, I REALLY hope that this is successful! Our prayers are with you (and your sister!)

 

[Tomahawk674]

Thanks!!

 

[gkainz]

Best wishes for you! We're seeing a lot of amazing stories from gene therapy and other new medical breakthroughs, like umbilical cord blood transfusions, et al, while we and our kids learn more about Cerebral Palsy for our grandson.

 

[qbynewbie]

I hope this is a dream that will actually come true.

 

[Everskyward]

It's nice to hear encouraging news. Hope it all works out for you and your sister, Jav!

 

[flyingcheesehead]

Awesome Jav!

 

[ReverendSlappy]

Jav,

My father has suffered from Choroideremia for most of his life. He just recently had to retire (at the age of 56) because his vision had deteriorated to the point that he could no longer read. While obviously I can't fully comprehend what you're going through, I have a pretty good idea.

While the consensus of the doctors he's in touch with is that his vision is likely lost for good, there is quite a bit of hope for people whose disease hasn't progressed as far; at the very least, it seems as though treatment that can slow -- or perhaps even stop -- the progression of these kinds of degenerative retinal diseases may not be too far off. From there, treatment to reverse the effects shouldn't be too far behind. I hope for your sake -- and your sister's all the others that are affected by these kinds of maladies -- that the experts are right, and that sometime in the not-too-distant future, we'll hear about your first solo!

Best of luck,

Matt

 

[redcloud]

Jav; What excellent news. Best wishes on continued progress in the treatment of your disorder.

Scott