Choroideremia Research Foundation Inc.
My Story
by Larry Hall
Like many of you, I spent years thinking I had retinitis pigmentosa (RP). However, my story had an interesting twist to it. Let me explain.
In 1986, I was diagnosed with RP. This was quite a shock since I was unaware that there was any history of eye disease in my family.
In 2003, I was reading the Foundation Fighting Blindness newsletter and learned that the National Eye Institute (NEI) was looking for volunteers with RP to participate in a Phase I safety trial of an experimental treatment for RP. I responded to NIH via e-mail and was scheduled for an initial screening visit to the NEI in Bethesda, Maryland.
At NEI, they performed several tests: acuity, fields, Electroretinogram (ERG), ptical coherence tomography and visual inspection, My left eye was bad enough to qualify for the safety trial. My visual acuity in my left eye was 20/120 and my ERG was under 2.0 micro volts. “Normal” is 20/20 and about 100 micro volts. I understand that only about 1 out of 10 subjects screened met the study entrance criteria (protocol). In June, I was notified that I was one of the 10 patients who had made it into the study!
In August of 2004, NEI implanted a very small capsule in my left eye. The surgery lasted less than 20 minutes. The device resembled a small piece of spaghetti, 1 mm in diameter and 6 mm long. The capsule contained living cells that had been genetically modified to produce
The device was implanted for 6 months and then removed. Every month, I went through a battery of tests. These tests are also repeated 6 months after the device was removed.
During the six month period the device was implanted in my left eye, my visual acuity improved from 20/120 to 20/50. Six months after the device was removed, my visual acuity was still 20/50.
At the six month check up, NEI also gave me a routine genetic test. Within a month, NEI informed me that I did not have RP, I had Choroideremia!
I immediately contacted the Choroideremia Research Foundation. The CRF leadership became rather excited and the rest is history...
Sincerely,
Larry Hall
Link for the explanation on the Neurotech website of what the ECT is and how it works:
http://www.neurotechusa.com/product_tech.asp
Link to the article telling about the success of the Phase 1 trial of the ECT on RPers.
http://www.health24.com/news/Eye_vision/1-909,34447.asp
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