The following is my Mom's story about her finding out about the disease, and her struggles.
I remember when I had graduated high school and had gotten glasses. I didn't really like my glasses much, so a few years
later I decided to get contacts. My sister-in-law, Lynnette, and I went to a nearby optometrist. He looked at my eyes and
told me he had never seen anything like them before. He called over another doctor in his building, he was just a family
doctor. He told me there was nothing to worry about. He said I just had a different pigment than most. I was only 21 years
old at the time and I didn't think too much about it.
Then quite a few years later at age 30 my sister, Kathryn, told me about a doctor in Layton that she had heard great reviews
about. So I made an appointment with him, and after seeing me he told me to go to the University Hospital in Salt Lake City.
I made that appointment and headed to Salt Lake with my husband and the 5 kids that I had at that time. I didn't think my
appointment would take longer than an hour, so my husband, Fred, stayed out in the car with the kids and waited. I was there
for what seemed like forever! They did every test imaginable on me and they still couldn't figure out what was wrong with
my eyes. They had quite a few interns working there at the time and I think I probably saw about 20 of them. Finally after
about 2 hours my husband came in to find me. I told them I couldn't say any longer so finally they took me to see the actual
doctor. And I must say I didn't like him much. I was waiting in the waiting room and he just stuck is head out of his door,
told me what I had, and said there was nothing he could do about it.
Well I could still see pretty good, so I left not too worried about much of anything. And I remember someone telling me that
this disease wouldn't take away your eyesight until you were really old, so I didn't feel like I had a reason to worry.
Then at age 46 I had a friend in my ward recommend another doctor. Their family really seemed to like him. His name was
Dr. Cook and I made an appointment to see him. After looking at my eyes, Dr Cook told me I needed cataract surgery. So I
had one eye done, and less than a year later I had the other eye done. But to me I couldn't see much difference with my eyesight
after the surgeries.
Not too much longer after that Dr. Cook said I had some build up and film on my lenses. He did a laser operation and broke
up the film and it was supposed to disintegrate. Well that didn't improve my eyesight either.
I had often heard that Retinitis Pigmentosa was genetic, but I really didn't think I had much of a family history with the
disease. My mom's sister was blind, but she was diabetic, and everyone thought her diabetes was to blame for her blindness.
My dad's sister was also blind, but she had a tumor on her optic nerve. At the end of my mother's life she couldn't see
very well either, but they claimed that was because her cornea was softening.
When I first started seeing Dr. Cook he recommended I take some eye cap pills. He said they had a high potency of Zinc and
Vitamin A. He said it wouldn't cure the problem, but it might stop or slow down the loss of my eyesight. Well it definitely
didn't stop it, but it might have slowed it down.
In 2002 I watched a Dateline episode that was about a new surgery they were doing in Chicago on patients with Retinitis Pigmentosa.
There was a Chinese Doctor there who had performed the surgery on twins. One twin the surgery really helped, but it did
not help the other twin. They wanted to experiment with 6 other people within the next 2 years. In 2004 I went to the Moran
Eye Center in Salt Lake City and I asked my doctor about that. Dr. Chang explained that the surgery would not do me any good
because I could already see light and this surgery was basically doing that.
While I was there visiting Dr. Chang he mentioned that they were trying to see if there was a connection between retinitis
pigmentosa and a chemical imbalance. So he did take a blood sample, and he is working on developing a pill to be able to
improve the chemical imbalance.
I also asked Dr Change about some of the experimenting that was being done with pig retinas. He did not know much about it,
but he thought he had heard they were practicing that in Russia, but not here in the United States. He told me that because
the retina is so delicate and fragile you cannot have a donor or a transplant done.
In 2006 the new eye center in Salt Lake City should be opening. I have been told that one whole level will be devoted
just to Retinitis Pigmentosa. I hope that they will be able to find a cure for this disease.
I remember when I had to quit driving. I have 10 children and my youngest was just entering Kindergarten when I had to give
up my drivers license. I knew then it was the start of me losing some of the freedoms and opportunities I had taken for granted
all of these past years. Five years ago I could go to church and I could see who was speaking, but now I cannot even see
who is sitting in the bench in front of me. When I was just a newly wed I went to the grocery store and I remember an older
woman asking me what was inside a can of food because she could not see to read the label, and now I had become that old woman.
I remember at times thinking I wonder if people will help me if I ask them.
Just recently within the last few months my sight has gotten a lot worse and really fast. I used to open the blinds in my
living room and it would cause such an awful glare, but now I can't tell the difference if the blinds are open or shut. I
just feel like I am sitting in the dark all day long. I used to see blind people with walking sticks and they were so mobile
and able to get around quickly. I am not that lucky.