EVENT DATE: Nov 05, 2011
Retinitis Pigmentosa (RP) is the name given to a group of hereditary diseases of the retina of the eye. The retina is located at the back of the eye and acts like film in a camera, receiving and processing all of the pictures that come into view. The retina is a delicate layer of cells that pick up the pictures and deliver them to the brain. In the human retina there are two types of light sensitive cells-rods and cones. Cone cells are located in the center of the retina, the Macula, and are used to see color and precise objects like small print. Rod cells are much more numerous and are necessary for peripheral and night vision. There are about 120 million rods in the human eye, mostly at the outer edge of the retina. In a person with RP, a breakdown has occurred in the function of the rods.
Since the retina is so complex, there are many forms of RP, and as a result, many different symptoms. But the basic deficiencies in all people with RP are a loss of peripheral vision, often called “tunnel vision”, and poor night vision, often referred to as “night blindness”. RP is a degenerative disease, which means that rod cells will continue to dysfunction over time, causing the further loss of peripheral vision but eventually entering the central vision, leading to total blindness. This happens at various times depending on the person, sometimes occurring in young children but many times not until middle-age or beyond. Some people may be diagnosed with RP as a child if their vision difficulties are apparent, as mine were, and others may not be diagnosed until a much later age.
Since RP is a genetic disorder; my parents both unknowingly carried the gene, which left me with a 25% chance of having RP. As chances often have their way, I was diagnosed with RP when I was 5 years old, at which time I had already lost a significant portion of my peripheral vision. Since vision loss occurs at such a slow pace, people with RP often adjust to the vision loss in such a way that they do not notice the changes at first. So, while it’s hard to tell how much vision I’ve lost since I was first diagnosed, my opthamologist visits have confirmed that my visual fields are around 4-5 degrees (out of 180), so it’s kind of like looking through a tiny straw, making things such as driving and playing sports nearly impossible. My night blindness and poor depth perception make it pretty difficult to walk in dim-lit restaurants, outside at night, etc. I have been able to “hang on” to the central vision in the middle of that “straw” in my right eye, however, so I am still able to read books, balance the checkbook, etc. I also have held onto my side vision, so it’s like looking at a puzzle where the frame of the puzzle is put together, along with the center of the puzzle, but there are various pieces missing in between. These “missing pieces” don’t look black or like anything really – they just aren’t there, so open dishwashers, small children, and flights of stairs tend to jump out of nowhere and end up being dangerous obstacles at times!
It is pretty common knowledge in the RP community that there is no known cure for the disease. There is, however, a lot of exciting research going on that my twin sister (also with RP) and I follow. While looking into some recent studies, my sister came across a treatment in Vancouver, Canada that has been showing some promising results.
After researching the Wellspring Clinic in Vancouver and talking to several patients with RP who have had positive results from Dr. Yu, my sister and I have decided to seek treatment at this clinic. They have treated over 350 patients with RP, and 85 percent of their patients have seen positive results. I connected with one man from Australia whose 10-year-old son went from 10 degrees of vision to 180. Others have seen more modest improvements, some going from 40 degrees to 80 degrees, improved night vision, visual acuity, etc.
For me, I look forward to any amount of improvement that will improve my family and I's quality of life. Since I do not drive, my husband really takes on much more than most spouses/fathers, and even the smallest tasks of being a wife and mother are quite challenging and time-consuming for me. Reading ingredients and recipes are very difficult, and recently even reading to my 5-year-old has become cumbersome. There are a number of her books that I can no longer read to her (i.e. ones with difficult color contrasts, smaller print, a lot of text.) If I could even run into 5 less things/people per day than I do now or walk my kids in a cart through the grocery store, that would be a marked improvement to my daily life. The thought that my night vision could improve enough to allow me to walk places on my own in the evenings also excites me. And, of course, the possibility that my vision could improve enough to allow me to drive is what motivates me most to seek this treatment.
The acupuncture treatment will be for 6 days, consisting of 3 sessions per day. The cost of the treatment plus travel expenses will add up to $5000. We are incredibly blessed to be part of a wonderful church community (called The Orchard Communty in Aurora, IL), which will be covering $2500 of this amount.
For the remaining $2500 we would like to extend the opportunity to you, our family and friends, to join us in this step of faith. There is obviously no sound guarantee that my vision will improve, but we are hopeful and optimistic, given the statistics and patients we have spoken to, that this treatment will be beneficial. We have been told that if it does work, results begin showing within a few days, while we are still there, so we invite you to follow both my sister and I's progress on our blog at www.doublevisionblog.com.