Stem Cell Clinical Trial for Retinitis Pigmentosa: Rosie’s Story


He said there is no cure and I was pregnant with twins. It was absolutely devastating to know that I would be a mom and that I would
eventually go blind When I’m four or five years old, I just thought
everyone saw the way that I saw. And it wasn’t until I went to first grade
that’s when the teacher, she noticed, she said, “We need to have your eyes checked.” I went in and they asked me to tell them which
direction the “E” was going and I wasn’t able to see anything on that screen. So I was always near-sighted and wore glasses
from the age of six. And when I was 26, that is when I decided
I wanted lasix surgery. And they told me they were unable to do the
lasix surgery because there was something that they noticed and they referred me to
the retinal doctor. And he confirmed that I had retinitis pigmentosa. Retinitis pigmentosa is an incurable, inherited
disease that slowly erodes the cells of the retina. That’s the light-sensitive area in the back
of the eye that’s responsible for vision. Over a period of ten years, there was a significant
loss in my vision and it just disabled from being able to the things that I normally did which
was reading to the kids and being able to look at their art and read my own writing
or make a list or just mundane simple things. Experiencing the clinical trial, it wasn’t
what I expected. I thought it would be much harder. I thought there would be more pain involved. The procedure was very quick, very simple. It was one injection and I must say it was
just painless. You know, there’s a little pinch. If you’ve ever had a shot, it’s just a shot but it was in my eye and not a big deal. Before the treatment, I’ve described my vision
as an impressionist painting in a foggy room. It’s been 17 months since my initial injection
and it’s hard to quantify and describe to people the improvement because although it’s
minimal it’s still so incredible. And my mom said, “I can tell. You’re looking at me. You can see me.” And I said, “I can mom, I can see you.” And she’s just, you know, tears in her eyes. I think she’s happier than I am. People say, “Oh, hindsight is 20/20.” And now when I think about it, I think, “Oh
no, my future is 20/20.”

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