I am Tenayshus (aka Shell) and I have Retinitis Pigmentosa, a hereditary disease that causes degeneration of my retina. Primary symptoms include loss of my peripheral field (tunnel vision) and decreased reaction to light signals coming from my eyes. There are many forms of RP, but my vision is like seeing the world through a large drinking straw with blurry central vision. I also have cataracts, which is common in RP patients, which may also contribute to my blurry central vision. Another hallmark of RP is the eye’s inability to process changes in light. This makes transitions between environments with different levels of lighting a challenge.
At the time of my diagnosis, I was seeking answers for my physical health issues at Stanford Medical Center in Palo Alto, California. I got some answers on my physical issues, including the basic neurological exam that was the first step in diagnosing my vision loss. The neurologist uncovered I had almost no peripheral vision. I was immediately seen by an Ophthalmologist at Stanford. We were flying home to Southern California the next day, so arrangements were made for my work up to continue at Jules Stein Eye Institute at UCLA.
At Jules Stein, I was seen by multiple ophthalmologists, underwent a battery of tests and they all ultimately came to the conclusions that I had RP.
The day I was told the results of all the testing and consults, my primary Ophthalmologist, Steven Schwartz, MD VERBALLY ASSAULTED my hubby seconds before turning to me and saying “It is RP like we thought. I don’t know if or how long it will take to lose all your vision.”
Being diagnosed with a sight-stealing disease with no treatments and no cure was devastating enough. But what was more devastating than learning I was losing my vision was minor in comparison to the fear my family and I experienced at the hands of my Ophthalmologist, Steven Schwartz, MD, Chief of the Retina Division at Jules Stein Eye Institute. The details are chronicled in my Seeing Eye Blog at TenaciousBlindGirl.com. If not for my AMAZING SUPPORT system, I never would have made it through those weeks and months following my diagnosis and the shame I felt at the hands of Dr. Schwartz. Even as supportive as my loved ones are, I need to interact with folks who know what I am going through.
Why I created TenaciousBlindGirl.com and LowVisionSupportGroup.com:
It began with my determination to find an online support community since I could no longer drive. I searched and searched for a site with the primary focus of offering SUPPORT to folks dealing with low vision from any sight-stealing condition as well as their loved ones. I found a few forums, but they were not regularly active or lost in the maze of forums on large corporate-owned websites.
After the support group began, I decided to blog about how my life has changed since my RP diagnosis and physical handicaps. So, here we are! Welcome to a member-centric online community and social network founded BY and FOR members!
Thank you for stopping by and I cannot wait to hear your story!