Shortly after I graduated from Gonzaga, I started doing a lot of Internet research on eye conditions in an attempt to explain my clumsiness - that's when I stumbled across an eerily fitting description of the condition known as retinitis pigmentosa (RP). Mostly, I was doing this research to assuage my curiosity - I don't think I truly believed something was "wrong" with me at the time. You see, with RP, it's hard to really gauge the vision loss. As it turns out, my peripheral and night vision have been slowly deteriorating throughout my life, so there has never really been an "AHA!" kind of moment where I could 'put my finger' on any noticeable change in my vision.
I first brought up the possibility of having RP with my parents, who rightly pointed out that it seemed odd that I wouldn't have been diagnosed in the 15+ years I had been seeing an eye doctor. However, we all agreed it made sense to raise the question in my next eye appointment. Several months later, I dropped in to get a new prescription at a Pearle Vision in Northgate mall with my buddy Rock. I posed the question to the optometrist who pulled out his scope to examine my eyes more closely. He quickly saw some of the telltale physical traits of RP: "mottling of the
retinal pigment epithelium with black
bone-spicule pigmentation" (as described on Wikipedia). He followed up with a computer-aided photograph of my eyes that more clearly showed the characteristics of RP and referred me to the University of Washington (UW) eye clinic for a follow-up appointment. Over the next year, my family and I visited doctors at UW and Oregon Health & Science University (OHSU) who confirmed that I had X-linked RP, in addition to my mother and brother.
The symptoms of RP vary significantly from person-to-person. In my case (and my brother is similar), I have a working field of vision of approximately 25-30 degrees (90 degrees is "normal"). At night, my vision gets much worse to the point where I have significant trouble navigating at all (e.g., I am essentially night blind). One of the most critical elements of the condition is its impact on my independence, namely my ability to drive a car (I touch on this point in
Part I of this blog). I am currently still legal to drive, but do so on a very limited basis and no longer drive at night. My initial diagnosis came about six years ago and it's been a rollercoaster of a journey since. There have certainly been some times where I've been left anxious, scared or depressed at the possiblity of losing my vision, but those times are relatively few and far between. Most importantly, I've got an amazingly supportive, loving wife, an incredible family support structure and some of the greatest friends a guy could ask for.
This past weekend, my family, Cara's family, and some friends all took part in the Oregon VisionWalk in Portland, OR, as a fundraiser for the efforts of the Foundation Fighting Blindness (team picture is below and Cara and I will post more on that later). I am also taking part in a clinical trial for a supplement that may help to preserve the retina and delay the slow degenerative vision loss. I'm also optimistic for several of the research projects ongoing with the FFB and it's affiliates, including gene therapy and retina transplants.
I could blog all night about my thoughts, analyzing, and experiences (both frustrating and uplifting) related to RP. But, this blog has already gotten pretty long. Before I end, I want to thank my beautiful wife, incredible family, and wonderful friends for supporting me, loving me and of course...for driving me around! Y'all are amazing!
