The Downturn

Documenting the downside is not nearly as much fun, but I promised a number of RPers I would be completely open about the entire experience. So, I was brought up with values that can be most inconvenient sometimes. Now is one of those times. I do not really like dwelling on decline, but I told you I would keep you posted.

The ability to easily read standard print was the last thing to come and the first to go. This started to slip around the same time as the contrast sensitivity. Today is the first day I have noticed the fields starting to close back in. My vision is still slightly better than it was prior to the implant, but the dramatic gains I experienced are gone.

I decided to delay my HBOT treatments until after my next implant. Mainly because I am looking forward to my daughter's birthday and going to the beach.

I have received multiple emails about some more work being done at Moorfields, where they have apparently already restored vision in people with retinal degeneration using their own cells. Why did the Foundation Fighting Blindness not include that in their newsletter? Maybe they did and I just missed it. They are helping fund the gene therapy work in the UK, which is a good thing.

Below is information from Reuters about the stem cell research in the UK. While the article discusses ARMD, the work done would most likely apply to RP as well:

Scientists plan stem cell cure for blindness
By Ben Hirschler Tue Jun 5, 4:07 PM ET
LONDON (Reuters) - British scientists plan to use stem cells to cure a common form of blindness, with the first patients receiving test treatment in five years.

The pioneering project, launched on Tuesday, aims to repair damaged retinas with cells derived from human embryonic stem cells. Its backers say it involves simple surgery that could one day become as routine as cataract operations.
They believe the technique is capable of restoring vision in the vast majority of patients with age-related macular degeneration (AMD), a leading cause of blindness among the elderly that afflicts around 14 million people in Europe.
Some drugs, like Genentech Inc.'s Lucentis, can help the one in 10 patients with so-called "wet" AMD and U.S. biotech firm Advanced Cell Technology is looking at stem cells in other eye conditions. But there is no treatment for the 90 percent with "dry" AMD.
AMD is caused by faulty retinal pigment epithelial (RPE) cells, which form a supporting carpet under the light-sensitive rods and cones in the retina.
The new procedure will generate replacement RPE cells from stem cells in the lab, with surgeons then injecting a small patch of new cells, measuring 4 by 6 millimeters, back into the eye.
U.S. DONOR
The London Project to Cure AMD brings together scientists from University College London (UCL), Moorfields Eye Hospital in London and the University of Sheffield.
It has been made possible by a 4 million pounds ($8 million) donation from an anonymous U.S. donor, who the project's leaders said had become frustrated by U.S. curbs on stem cell work.
Embryonic stem cells are the ultimate master cells of the body, giving rise to all of the tissues and organs. Their use is controversial because many people oppose embryo destruction, although Britain has encouraged such research.
Surgeons at Moorfields have already restored the vision of a few patients using cells harvested from their own eyes, which were moved to a new site. But this process is complicated and only a small number of cells can be moved, limiting its use.
By injecting RPE cells derived from stem cells instead, Dr Lyndon Da Cruz of Moorfields hopes the operation can be reduced to a simple 45-minute procedure under local anesthetic.
"If it hasn't become routine in about 10 years it would mean we haven't succeeded," he told reporters. "It has to be something that's available to large numbers of people."
Similar tests on rats have already proved highly effective.
Pete Coffey of UCL, the director of the project, said he was confident the procedure would work in humans but the team needed to ensure the safety and quality of batches of cells, which would take time.
"The goal is within five years to have a cohort of 10 or 12 patients to put the cells into," he said.
The project, which is non-commercial, was welcomed by patient support groups. Alistair Fielder of the eye research charity Fight for Sight said it represented a real chance to tackle a hitherto untreatable condition.

The thing that is exciting to me about this is both the gene therapy research and the stem cell work is being done in the same place. This means, just maybe, these researchers are playing in the same sandbox with the possibility of sharing toys. One can hope they are collaborative, anyway. Maybe they will combine modalities and come up with something that could truly revolutionize the treatment of these diseases.

It could be revolutionary if they do not suffer from the truly blinding scientific myopia of "cannot confound my data with more than one variable at one time". This may seem logical to you if you spend your day in a lab, go home in your own car and toss your keys wherever, knowing you will be able to find them later.
If you are going blind, losing control of your body functions due to ALS or remembering playing soccer from your wheelchair thanks to MS, you are looking for therapeutic interventions that work and expect them to be tested as such.

According to this article, this work in the UK is funded by an American who was frustrated and gave $8 million dollars for someone to do somthing other than the intellectual equivalent of bicep curls. Firstly, I am really impressed they can do anything with $8 million dollars, if that figure is true.

I do not know what the British equivalent of the FDA is, but if they are already doing this in humans it must have some sensible guidelines and exceptions for certain diseases. The impression I get from this article is that they went from rats to people. Does anyone know if that is true?

In the US, we would still be working our way through the barnyard. I believe it may be rats, then dogs and pigs and finally people, followed by a lot more people? Someone once told me that one rat with RP costs $40k. They use people to test safety, then more people for efficacy, still then more people....Oh and you have a separate group of people who believe they are being treated but are not, to test the treatment against the placebo effect. Yet, Americans die all of the time due to drug reactions, even though the prescription drugs were taken as directed. I am puzzled. Maybe Darran can clarify for me. You can now leave comments anonymously and without registering. As an aside, I really appreciate those of you who have taken the time to comment. It is easier for me to keep up with and very encouraging.

If Moorfields is looking for someone who is willing to have gene therapy and then get a stem cell operation using my own cells or another source of cells aside from embryos, I will fight with you in line to be their girl.