My name is Brian Aston and I suddenly lost my vision when I was 20-years old due to a genetic disease called Leber’s Hereditary Optic Neuropathy.
I was at a memorial golf tournament in memory of my father who had passed three years earlier. I was on the 18th hole, I drove the ball down the fairway, got in the cart and drove to where my ball was. When I reached my ball I then looked for the pin or flag to take my next shot and I could not find the flag. I was with my now Stepdad and we were basically argued back and forth about where the flag was and we eventually walked to where he said the flag was and suddenly about 15 feet away from the flag it appeared right in front of me.
Just like that in a matter of moments my left eye was almost completely blacked out.
So a few days later I went to get my eyes checked, I thought I just needed some glasses. At my ophthalmology appointment the doctor recognized right away something strange and asked me if he could dilate my eyes severely and do some extra tests. I agreed and after conducting his tests he asked if I could go to Swedish Medical Center right away and see a Neuro Ophthalmologist. So I called my mom and let her know what was going on and I stayed at the office for a while then drove home and then we went to the doctor’s office to see what the heck was going on. Once I was downtown I went trough a battery of eye tests and spoke with the doctor who had a diagnoses of Optic Neuritis, which was explained as going over a mountain, you lose most of your central vision and gradually you would regain most of your sight back.
So, not too bad but my left eye was totally useless. It took only a few weeks for my brain and eyes to get back on the same page and I was able to read and drive again. During this time, I was attending ITT Tech for computer networking and went to class with an IV in my arm giving me steroids during class. I was trying to stay in school and keep my life going but I had to drop out, it just wasn’t possible to go to school any longer during this process of sight loss. So like I said I was able to adjust to my new sight after a few weeks and start moving forward again.
A few months later I re-enrolled in school, this time at South Seattle Community College, studying the same computer networking. So now it has been about 5 months since my sudden loss of sight in my left eye and it was just after mid-terms, which I aced. I was sitting in class doing some programming and I noticed that some of the lines/text was starting to blur. I paid attention to this and every few minutes I could notice that I was just losing sight by the minute! I raised my hand, proclaimed that I was going blind, grabbed my stuff and took off. I called my mom right away and let her know “its happening again.” I jumped in my car and proceeded to drive home like Mario Andretti.
The next day I went back to the eye doctor and went trough all the same tests and talked with the doctor about what was going on; he was still saying Optic Neuritis but thought it could also be other things. So we decided to admit me into the hospital the next day to observe my condition and run some additional tests. I went home that night and the next day I packed a bag and went to the Hospital to lie in a bed and continue going blind. I went back on the steroids and also had to do MRIs as well as have pictures of my eyes taken with this special camera that can take a picture of your retina and optic nerve. They also took a bunch of blood samples to do additional testing. This is what ultimately gave me the solid diagnoses of LHON G11778a.
After spending a few days in the hospital I was released to go home. Now this happened on February 16th 2004, exactly 5 months after the first episode on September 16th, 2003. The day I went home from the hospital I was considered legally blind with a visual acuity of less than 20/200.
I am now blind.
I was connected with Community Services for the Blind and learned a little about mobility and using a white cane as a blind person and got some help and advice on the every day things like using a microwave and other household things like that. A few months later I started at a school for the blind at the Washington State Department of Services for the Blind and their Vocational Rehabilitation Center. This is basically set up like high school with different classes and periods. They teach you Braille, Computers (how to use a screen reader program) Mobility, Woodshop, Home Ec (cooking, cleaning, sewing) among other things. Usually it takes people about a year to go through this whole program and I was able to complete it in 6 months. I had to go Monday through Friday from 8am to 5pm everyday and if it wasn’t all bad enough once I got there they made me wear woodshop glasses with black plastic melted on the lenses so you couldn’t see at all or wear a blind fold. This was done so I could do all of these tasks I was learning at any level of vision.
The disease I have is so rare there have only been a few people to go through this school in its history that have what I have, LHON. So I have gone blind, learned how to be blind and now I just get to be blind. For the first 5 years I could find almost no information on this disease and had very little knowledge of what’s going on or why it happened, what parts of my body are actually affected and if there was any way I could ever see again. So basically because there was such a lack of information for so many years the hope was dwindling and I gave up looking after 5 years.
Two months ago I was mad at life and jumped on the computer to look again because I’m so tired of being blind. I couldn’t believe it, there was a ton of information on LHON now. I was able to connect with others who suffer from LHON on Facebook and Yahoo Groups and I started researching 2-6 hours a day! I have spent countless hours leaned over with my nose to the monitor reading at 5x magnification screen on High Contrast mode (black and white). Just reading website after website of information on LHON. I would say that I have read through most everything on the net about LHON now and have a great understanding of this disease, even though not everything is known about this crazy X linked Mitochondrial DNA Disease.
After all my research I have come to 2 different options now for treatment and options to try to get my sight back:
1. Idebenone, a simple supplement that is CO Q10 based that has helped many people regain sight. The results are different for every person and vary from helping the cells to be healthier but no real noticeable vision increase all the way to spontaneous recovery!
2. The second option is Gene Therapy. Now this is a real hope for an actual CURE for LHON. The Bascom Palmer Eye Institute in Miami FL has a research study for this and in the animal testing phase it was highly successful. They are now working on the human application and will be moving forward hopefully soon!
The Idebenone pills have helped a lot of people gain some if not a lot of their sight back but this Gene Therapy study is the real hope for a treatment/cure for LHON.
I am on a path to both!!
As my motto goes, DTC! Desire To Conquer!!
Stay Positive and Go for Your Dreams and the world can show you what’s possible!!!
– Brian Aston