You know her for her sensational portrayal of Jessica, the tormented n00b vampire on HBOs True Blood. The actress and wonderful woman behind Jessica's incarnation is Deborah Ann Woll and there is a cause very dear to her heart that she wishes to raise awareness for. We found this article and cause to be particularly heart touching. Also, we believe significant and swift changes can be experienced in the lives of people suffering from the affliction described below if enough people help out. And it's nice to see the difference you wish to make made...
The following was posted on Nikki Reed's (Twilight) blog on July 28, 2010 :
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 man know her from her brillant 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 loves. 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 Sheveport, 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 plesant 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...
EJ's Story:
"My brother originally got tested because he had violent migraines throughout his life. He was misdiagnosed numerous time even after extensive testing and CAT scans. Eventually they found he had Choroideremia. This was seven years ago. After that the rest of the family got tested. When I was a teenager I started noticing that I had light flashes and trouble seeing in the dark. There was this one time me and my friends went to this spot in the woods and they all walked ahead, and I got lost because I couldn't see the path. Someone had to come and get me. At that point I went to a doctor and he said my eyes were fine.
In 2003 we found out I had it. Since then I lost a lot of my sight. 2/3. Legally blind is less than 20 degrees in each eye. I don't drive at all now. I moved to LA to be an actor, and I was having so much trouble with my eyes that I moved to Chicago because it's a city that really supports Improv and it has a better public transportation system. Now I do unscripted ensemble scenic comedy. My team knows that if they do something in my peripheral they may have to do it again, because I probably didn't see it. That makes improv challenging. I bump into things, and the introduction to the cane was difficult. I don't leave without it now. Since I have a little bit of my sight left people don't assume there could be a problem. They think I'm just a normal guy and it puts me in situations that could be uncomfortable and some that are dangerous, such as cars coming to a stoplight too quickly assuming I can see them. Before the cane people would hold out a hand to introduce themselves and I couldn't see it, so they would think I was a jerk. I would bump into people and they would get angry. The cane is a signal to others that they are dealing with someone with a different perception. I liken it to hazard lights on a car, it warns people, they go around me.
Its scary being told that you have this thing you've never heard of before. My family didn't know that my grandfather suffered from this. I want people to know about it so if they ever get told they have it they don't feel alone. I think about reading as much as I can as fast as I can, watching as many movies as possible, traveling to all the places I've never been, having kids while I can still seem them. I want to look at my beautiful girlfriend's face as much as I can."
He looks over at Deborah who is crying and say, "Don't cry, you're going to ruin your mascara." She smiles.
EJ, EJ's nephew and Deborah
We live in such a visual world where we rely so much on being stimulated by what we see. Would the word be as impactful if we couldn't?
"To take someone's vision away would be like learning how to be emotionally moved all over again," say Deborah.
EJ's younger nephew
Side note:
EJ wanted to be a comic book artist, in fact he went to school for it. He later decided he wanted to be an actor, and after finding out about his degenerative eye disease he moved into the improv world. He has a 5-year-old nephew that has it, and there is a 50% chance that his 1-year-old nephew has it as well. Women are carriers, so both his mom and sister carry the disease but it rarely affects women. His grandfather went blind from it. The progression differs with each individual. EJ told me about one 10 year-old little boy who has already lost all of his vision. On August 1, EJ will be part of the "Rock and Roll Half Marathon" in Chicago. He will run a full marathon on October 10th. Both will be done blindfolded for metaphorical purposes but more importantly because his eyes are so light sensitive. He hopes this will help raise money for the cause and increase awareness.
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
Where to learn more:
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.
The ultimate fundraising goal is to start clinical trials in the next 3-5 years but they need apporximately 2 million dollars to begin clinical trials which would put a halt to the degeneration, but not reverse it. For those like EJ who have it there is an obvious sense of urgency.
Note from Deborah:
Since this is such an isolated disease, it's been very difficult to get funding. Pharmaceutical companies are more likely to give funding when it affects a larger group of people, so we are relying on donations. This is a real solvable issues and if you want to be involved in something where you can really see the results this could be it.
Source 1
Source 2
I think what Nikki Reed mentions about the claustrophobia that accompanies a lack of vision is just harrowing. I try to walk around my own damn bedroom that I've lived in for twelve years with my eyes closed and I can't do it with an ounce of confidence or grace. The thought of slowly but surely losing your sight is just beyond devastating. I was heartbroken to read about his urgency to read, see, view and take in all that he can and then hope he is able to remember it all. Especially touching was his urgency to have children while he is still able to gaze upon their faces. As we remind you during our eye candy Wednesday posts - well the one we've done thus far - (oh crap, it's Wednesday!) your eyesight is a gift and you should treasure it. KB.LuSH was thrilled to make a donation to support this cause and we urge those of you who can to do the same.
No comments:
Post a Comment