There are people who live with this all the time who don’t play vampires…
If you’re a Twilight fan, its possible that you’ve heard/read about the cast complaining that we have no peripheral vision due to the lenses we wear in the films. The claustrophobia that comes from having limited vision is indescribable, and it makes every move/interaction more challenging. Unlike EJ Scott, a man who I have recently become friends with, I get to take those lenses out everyday and I can see normally again.
Deborah Ann Woll is one of the most gifted actresses of our time. (You may know her from her brilliant portrayal of Jessica on “True Blood.”) I recently had the privilege of playing her little sister in a movie called Catch 44. There are many layers to Deb and she does a very good job of protecting her personal life. But a few days ago she opened up to me about something very serious happening to someone she loved. She told me that in a couple of weeks her boyfriend was going to be doing a half marathon - blindfolded. I smirked, not understanding the weight of what I assumed was a joke, and she explained that the blindfold was a metaphor, because her boyfriend EJ is actually going blind.
Although she doesn’t want any recognition in this situation, as an outsider I have to say that she has a very apparent strength, which is beyond inspiring to those around her, and her beauty both inside and out is something otherworldly. I will leave it at that. EJ flew in to Shreveport, to visit us while shooting. They both asked if I would post something about his disease, as not many people know about it, and awareness is the key to making a change. From the moment I met EJ I could see why she loved him so much. Aside from being incredibly handsome, he has a brilliant sense of humor, and manners that give the word ”gentleman” a whole new meaning. Even with the challenge of his limited eyesight, he still manages to open every door and pull out a chair for all of us girls. He is just a generally pleasant man and is truly a joy to be around. We sat and talked for a while before coming up with the idea of talking about it on my site. Who knows, he told me, maybe someone somewhere will read it and feel less alone. I asked him to tell me a little bit more about the disease and his journey over the last seven years after finding out that he had it…
Facts about the disease:
Deborah Ann Woll is one of the most gifted actresses of our time. (You may know her from her brilliant portrayal of Jessica on “True Blood.”) I recently had the privilege of playing her little sister in a movie called Catch 44. There are many layers to Deb and she does a very good job of protecting her personal life. But a few days ago she opened up to me about something very serious happening to someone she loved. She told me that in a couple of weeks her boyfriend was going to be doing a half marathon - blindfolded. I smirked, not understanding the weight of what I assumed was a joke, and she explained that the blindfold was a metaphor, because her boyfriend EJ is actually going blind.
Although she doesn’t want any recognition in this situation, as an outsider I have to say that she has a very apparent strength, which is beyond inspiring to those around her, and her beauty both inside and out is something otherworldly. I will leave it at that. EJ flew in to Shreveport, to visit us while shooting. They both asked if I would post something about his disease, as not many people know about it, and awareness is the key to making a change. From the moment I met EJ I could see why she loved him so much. Aside from being incredibly handsome, he has a brilliant sense of humor, and manners that give the word ”gentleman” a whole new meaning. Even with the challenge of his limited eyesight, he still manages to open every door and pull out a chair for all of us girls. He is just a generally pleasant man and is truly a joy to be around. We sat and talked for a while before coming up with the idea of talking about it on my site. Who knows, he told me, maybe someone somewhere will read it and feel less alone. I asked him to tell me a little bit more about the disease and his journey over the last seven years after finding out that he had it…
Facts about the disease:
- The disease is called Choroideremia.
- Basically over time the peripheral vision gets eroded turning one’s sight into tunnel vision, with the inevitable outcome being 0 percent vision.
- The foundation is the Choroideremia Research Foundation. You can also go to www.curechm.org for more information. Currently 1 in 58000 suffer from Choroideremia, and it is hereditary. Facebook pages made by EJ are also accessible. All you have to do is type Choroideremia into the search window.
- Ej’s blog spot is located at www.ejcurechm.blogspot.com. You can donate at either location.
Source for the full story
xoxo
Carrie
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