Deborah Ann Woll has impressed me with her extraordinary performance on True Blood. Her boyfriend E.J. Scott has equally impressed me but for a completely different reason. I met EJ through the Deborah Ann Woll Facebook Fan Page, we became Facebook friends and I learned that EJ has a hereditary disease called Choroideremia (CHM). To say it short and crude… he is going blind and there is no cure.
The Choroideremia Research Foundation (CRF) however, has made enormous progress in developing a cure and with the proper funding they are potentially within two short years of human clinical trials to CURE Choroideremia.
You can ensure that the Choroideremia Research Foundation will be able to continue their work by making a donation, no amount is too small. Many True Blood fans have already donated, join us…. so we can all say in a couple of years that the True Blood fans helped to cure blindness!
The Vault was the first True Blood fansite to support EJ’s fundraising efforts for the CRF and we will continue to do so in the future. The Billsbabes connected to The Vault support EJ’s fundraiser “Losing weight for charity”. We have already donated $22.53 for every pound he loses and this total is still rising. If you want to join in, contact us at firstname.lastname@example.org.
Or you can donate by credit card directly and safely to the Choroideremia Research Foundation using the PayPal button below. Donations are tax deductible for US residents.
Recently, I asked EJ when he was diagnosed with CHM and how CHM has affected his life. The following represents the interview with E.J. Scott.
At what age were you diagnosed with CHM? What were your symptoms?
EJ: I was diagnosed in March 2003. I was 27. I got tested after my brother, who has always suffered from violent migraines, went through a bunch of tests to find the root of that problem. He had some eye tests done. We were both originally diagnosed with Retinitis Pigmentosa (RP) a disease very similar to Choroideremia (CHM). The symptoms seem to be almost the same. I think a lot of people get misdiagnosed though. It’s important to get a second opinion I think. My grandfather thought he had RP and it was basically never discussed in my family that other people in the family might be in danger. A lot of denial was going on. They had that mentality of “don’t talk about it if you don’t have to”.
Symptoms? I started noticing something wrong when I was a teenager, maybe around 15. I would see flashes of light in my eyes (which I still see today). It’s hard to explain. I think when people get hit on the head or something they see flashes. But I don’t need to be hit in the head to see the flashes. I define it like white fireworks going off in your eye. What that is, as it was explained to me, it’s like a bad connection from your eye to your brain. Sending images and messages, but having some trouble.
I went to an eye doctor specifically to explain to me why I get these flashes back then. He took a look at my eyes and determined I was fine. Thanks, Doc. So I ignored it for over a decade.
I had some light sensitivity, but didn’t think much about it. I had trouble seeing in the dark too and didn’t know what to make of that. (That stuff has increased and gotten real bad now).
I always felt like I was a smaller sized man trapped in a larger man’s body because I was so clumsy and bumping into things and knocking things over all the time.
CHM is a hereditary disease. Who else is your family has been diagnosed with it?
As far back as we can figure is my grandfather, on my mom’s side, had it and went totally blind in his 40’s, then when my brother got diagnosed the whole family had to get checked out. The results are…. My mom is a carrier, my sister is a carrier, my brother (who is younger than me) has it, my five year old nephew has it, and my one year old nephew is up in the air right now. I don’t know if he’s been tested yet. There is a chance he doesn’t have it. My aunt (my mom’s sister) is a carrier, but never had children.
If I ever had children my sons would be fine but my daughters would be carriers. So the family figures that my great grandmother was probably a carrier. My grandfather passed away about 18 years ago so we can’t ask him. My grandmother just passed away but the family thought it was best not to tell her about the Choroideremia strain that was discovered in our family.
What happened to you and your family when so many family members were diagnosed with CHM?
It shook our family really bad. Still does, but we’re getting better at dealing with it. I think anybody that goes through anything like this, should get some counseling or therapy to work out feelings. I know I could really benefit from it, but have yet to see anybody. But I can’t afford it so I’m trying to get some free counseling. I think it’s really important to get stuff out, talk things out. Get a professionals point of view of things.
All the carriers, not just in my family, generally feel guilty about passing on the disease. I tell people that I was never angry at my mom for passing the gene to me. I’m happy to be alive and here and if I got some shit to deal with than I’ll deal with it. I just wish there was more communication a long time ago.
I’ve noticed that a lot of people that are diagnosed with the disease don’t want to talk about it. I was like that the first year. I was in denial and convinced myself I saw fine and maybe this wasn’t going to be a big deal. I was wrong.
How did the idea you had about your future change?
Everything changed. When I found out I was saving up money to move to LA from Long Island to become an actor and to get back into improv. I had gotten into a car accident the week before I found out about CHM. It was mainly the other person’s fault but if my eyes were better, maybe I could’ve avoided it somehow. The other person was driving recklessly.
But I had decided to follow through on my decision and my parents were supportive of that. However, after being out there a few years it became obvious that getting an agent or manager or acting work that would accommodate my needs were probably not going to be possible. So, I decided to move to Chicago so I wouldn’t have to worry about driving anymore and I can still improvise. What made that a difficult decision was falling for my lady.
How has CHM affected your vision? How do you see the world?
I have pretty much no peripheral vision left. It’s next to impossible for me to see in the dark. Bright lights make me nuts and are painful. I stay indoors as much as possible while the sun is out. I have my windows covered all the time. Not all CHMers have the sensitivity that I have. My central vision is okay. I started wearing glasses a few years ago. I can read, although occasionally words will look slightly distorted. I also have a small cataract in each eye.
If I get tapped on the shoulder and I turn around to see who it is, I won’t be able to tell who it is unless I take a step or two back. It’s hard to explain. Yes it will be like looking through a straw for me, but right now it’s more like looking through a thick straw that you might use for milkshakes.
Which difficulties do you meet in your daily life due to CHM?
Not going outside whenever I want is annoying. I carry two pairs of sunglasses on me all the time. Each tinted differently for really bright days or cloudy days or if I need them indoors. The sun is really dangerous for my eyes. I have a hard time with being around crowds. It’s too much for me to bump into. I get really uncomfortable if I’m somewhere too dark or crowded. It’s weird. It’s a very helpless feeling. It gets a little scary for me, unless I can sit and not move, that helps.
I bump into furniture and knock things over and lose things that are right in front of me. My eyes play tricks on me. It’s not constant, but it happens.
I get to control the light in my apartment which is really important. I get nervous if I have to go somewhere new because I don’t know what the conditions are or if I’ll be comfortable.
I wear a hat ALL the time. And it’s really annoying. But it helps keep indoor and outdoor lights and glare down.
Do you need the help of a walking stick; do you have special software on your computer?
I prefer the term cane as opposed to stick. I feel like if I had a walking stick I should be hiking up a mountain or something. :) That’s new for me. I’ve only been using one for a handful of months. It helps the most in crowded situations; sidewalks, concerts, airports, etc. But it also helps to not get hit by cars or buses. So as much as it’s for me, it’s also for other people to look at it and go “might wanna be careful around that guy”. It’s like hazard lights on a car. I bump into children, animals, fire hydrants, caution: wet floor signs, bump into walls or trees, etc. The cane helps cut down on that.
I have a Mac and they have a great function where I can zoom in and make the page bigger which is a big help. The only software I’m aware of is for a PC. What that has, that I like, is changing the color of a page. It’s easier on the eye. Mac doesn’t do that that I know of. Get with it Apple!!
Are there activities that you enjoyed before but are unable to do now?
Luckily, I’ve never been an outdoors-y person. But it would be cool just to go swimming at a beach with my nephews or something like that. My girl and I talk about traveling and that makes me nervous. We went to the Grand Canyon and it was great but it was also painful, so much sun. I used to drive. I don’t anymore, gave that up for good. That was tough. If I was still in LA, it’d be really tough.
Are there activities that you never did before CHM started to decrease your vision but are enjoying now?
Hmmm…, I don’t think so. I can’t think of any.
My joke answer is flying planes.
You are an acting school graduate. Do you still perform?
I went to the School for Film and Television in NYC for a couple of years, but I feel like calling it an “acting school” is a stretch. There were some really great teachers and I made some great friends, but I thought it was too much money for the experience. I think the experience was a good starting off point to learning your craft. They changed the name of the school now and apparently they’ve done a lot to the school since I went. I hope it’s better now.
I discovered improv at HB Studios in NYC (which is a theater school and a fraction of the price) with a teacher named Rasa Kazlas. I think that was 11 years ago. But I fell deeply in love with improv and hope I can do it for as long as I can. I perform sometimes here and there in Chicago, but my schedule is all over the place right now. I’m taking classes and interning at a couple improv theaters out here.
Do you work? Are you able to support yourself?
I guess I’m a freelancer. I get work when and where I can. I’ve had to turn down jobs because they are outdoors, promotional type stuff. Even indoor jobs are tough. Most places won’t let me wear a hat at work. And being on the computer can sometimes be uncomfortable. I use to move furniture for money and had to give that up. I didn’t really mind giving that up. But it’s getting harder and harder to find work.
Eventually I’d like to teach improv. I could do that for a long time if I can find a theater to hire me.
Do you receive financial help from the government?
I’m “legally blind”. Each eye can see about 90 degrees around. When you’re “legally blind” like me you have less than 20 degrees in each eye. I’m at around 15 degrees by now maybe less. It’s been almost a year since my last eye exam. When I first got tested in 2003 I was at around 70 degrees in each eye.
I’m collecting disability and I receive food stamps. That’s keeping me afloat at the moment. Everyday’s a struggle. Dealing with the government is a full time job.
Do people treat you differently now that you have a disability?
Most people are very kind and helpful, even strangers on the street. People are generally nice to me; I’d like to think it’s not because of my blindness.
I went looking for a new apartment a couple months ago and this woman didn’t rent to me because she was afraid I would fall down the stairs.
I get looked at a lot. And since I can still see some stuff people look at me kind of confused. Like if I can see why do I have a cane? It happens on buses and trains when I fold up my cane on the CTA and then start reading a magazine. One woman asked me why I have the cane and I had to explain. I think she thought I was faking being blind. And there are a lot of people I see regularly who kind of don’t know what to say or do when they see it for the first time. I like it when people ask about it. Instead of pretending there’s no blind pink elephant in the room.
I got fired after two days of a temp job that was suppose to last a few weeks because I was too slow. I didn’t tell them about my disease, but I did say my eyes weren’t good. Fired from a temp job! That’s pretty bad!
Quick story: Years ago I studied bartending; because I thought that would be a great part time job while pursuing acting. This is before I knew about the CHM. A friend of mine got me a chance to bartend after my classes at a bar in New York City. The manager would point to something and I couldn’t see it, glasses or whatever. The bar was pretty dark, but not THAT dark. I was panicking and couldn’t figure out why I couldn’t see things he was pointing at. After two hours of getting yelled at, it was obvious I needed to leave.
How did you come up with the idea for your fundraiser “Losing weight for Charity and myself!”?
I weighed myself on my girlfriend’s scale and saw that I was heavier than ever. I mentioned it to her and said I gotta lose weight. This is crazy. But it’s hard. She suggested a bribe or incentive and I thought that could be a great way to raise money for the Choroideremia Research Foundation. I immediately thought that I could lose weight if I did that. It gave me hope.
How much weight have you lost and how much money have you raised so far?
Just about 25lbs since July 1st. I am being sponsored at over $122 / lb. I want more though. And I’m nervous that people will say they will donate and then forget or something. But it’s already more than I thought I was going to get when the idea started.
I’ve done lots of benefits and fundraisers in LA, but haven’t done one in a long time, because they are so stressful for me, but this seemed pretty stress free.
How are you losing the weight? What diet are you on?
I’m on the E.J. diet. Basically I am not eating or drinking anything that is bad for me. No fast food. No soda. No beer or alcohol. No breads or pastas, more veggies and fruits and a lot of protein; chicken, turkey and egg whites. I’m trying to be aware of my behavior. I don’t buy juice even, because I know I’m capable of drinking the whole thing in no time. And that’s a lot of calories. I drink a lot of water. I’m trying to look at it as a “lifestyle change” as opposed to a diet. I want to keep the weight off forever.
Heart disease and diabetes and high blood pressure and high cholesterol is in my family. I gotta be careful and not ignore that and hope for the best. Sometimes hope isn’t enough and I have to actually DO something. That’s what this is.
Did you have to buy a new set of clothes yet?
No. I couldn’t even if I wanted to. I still have clothes that I grew out of, so I can start wearing those again.
When and how did you and Deborah meet?
Deborah who? :) Deb and I met online in November 2007 and met in December 2007. We like telling people that to see their reactions. But it’s true. I was on Match.com for almost two years. I met a lot of really great ladies but nothing really worked out for whatever reason. Some I still keep in touch with and who are supporters of mine. She got talked into signing up one night and I found her immediately.
I wrote on my Match profile about my disease because telling someone on a first date or even a few dates in about it is very awkward and of course you never see them again. so the ones that I met already and knew, cut down on weirdness.
Now before you ladies jump on line looking for your very own blind comedian, be warned. Deb was on for a very short time because she got harassed with rude and crude comments and canceled her account pretty quickly. Luckily, she likes honest, nice, funny guys.
You live in Chicago and Deborah in LA. How are you experiencing this long-distance relationship?
It’s hard. We miss each other all the time. I’ve moved to Chicago about a year ago. I had made that decision to move before Deborah and I met.
She’s doing things that she feels like she has to do and I am doing what I feel I need to do. We are both really supportive of each other. She’s doing great in LA clearly and I’m enjoying Chicago and think I’m doing pretty good.
We see each other at least once a month, usually at least a week at a time. Lately it’s been every couple weeks. She comes here or I go there. Now she’s starting to film movies and travel and if I gotta fly to her, I will. We Skype everyday and call and text each other all the time. We love each other more than ever and that’s good. I never thought long distance would be possible and I wouldn’t recommend it to people either, but we’re doing it and I think we’re doing a good job at it. She’s the love of my life.
I’d just like to say thank you to all the supporters out there. It’s really important to me to get the word out there about Choroideremia. I had never heard of the disease until I was told I have it. That’s a scary thing and would like it if Choroideremia wasn’t such a mystery. I also would like to encourage people with blindness to not be afraid to talk about it. Very little gets done when people are silent. There’s no shame or embarrassment in being blind. One of my heroes since childhood has always been Michael J. Fox and seeing how he is dealing with his disease is inspiring.
I met a high school kid named Matt Seeney last year at a Choroideremia conference. He was only recently told about his CHM before I had met him. And he told his school newspaper and got the word out there. He didn’t hide. I thought that was a really courageous and brave thing to do, especially in high school. I thought that took a lot of guts. He’s a strong kid.
Please help and continue to help Spread The Word about CHOROIDEREMIA.
There is a beer tasting fundraiser coming up in Massachusetts. Go here for more info.
Read about the bike trip across the country that my brother in law did two years ago to raise awareness and money for the CRF. I was on the trip with him and blogged about each day’s adventures. It was pretty wild. Thank you so much. www.myspace.com/choroideremia
E.J. Scott and the Scott family.
You can donate by credit card directly and safely to the Choroideremia Research Foundation using the PayPal button below. Donations are tax deductible for US residents.
This PayPal button was provided to the Vault by Cory MacDonald, Executive Director of the Choroideremia Research Foundation.
Photo of Deborah and EJ courtesy of E.J. Scott.
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