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…
Deborah Ann Woll and EJ Scott
EJ’s Story:
“My brother originally got tested because he had violent migraines throughout his life. He was misdiagnosed numerous times 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 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 see 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 says, “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 world be as impactful if we couldn’t?
EJ's nephew
“To take someone’s vision away would be like learning how to be emotionally moved all over again,” says Deborah.
EJ and his nephew
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 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 a 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 approximately 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 desease, 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 issue and if you want to be involved in something where you can really see results this could be it.
EJ's youngest nephew
I have bad eye sight I can only see things if they are very close, but with contacts/glasses I am able to see. My whole life I have loved to draw and create artworks of art, that is why I am currently enrolled to getting my associate degree in graphic design, hopefully following my bachelors, and eventually own my own bussiness for graphics. So I don’t really know what I would do if I lost my eye sight. Right now in one of my classes for a project we are to create a 3 dimensional direct response solicitation to promote a better understanding of the mission and to ask for support from recipients for a non-profit organization of our choosing. And after reading this, I plan on doing my project on this disease’s organization, even though its just for a project grade. But by choosing this I know I will bring knowledge to this to those in my class and who knows maybe more.
Dear Nikki,
I saw your blog and wanted to talk about many things, but this I have come to the heart. Today was a very sad day with the news of the earthquake in Japan. And just … I want to comment as I felt when reading this.
The story of EJ and Deborah is amazing. Not only very sad and touching, it is also nice to see the love they feel for each other, and to continue to combat this disease and try to educate the world about it.
And the fact that you’ve decided to share this with people who follow you and tell others to which this disease. It also shows that not only are a great actress, if not even more important, are a great person.
Nobody in my family has had any disease of this type, but my father has a disease called bipolar disorder.
I know that this does not have anything that to see with EJ’s disease, but I can understand perfectly like it is possible to feel, on having lived with a complicated disease and that implies the whole family.
Anyway, just wanted to say that all my good thoughts and my prayers are with EJ, deb and her family.
P.D: Nikki, I can not explain how much I admire and appreciate (without even knowing you) but I want you to know you’re great!
Good luck and all my love
Maria, from Spain
It was sooooo awesome getting to meet Deb this past weekend and it was nice to see EJ there. I wished them both the best. I waved by to EJ and him waving back made my day =)
So amazing to meet truly inspiring people!
I’ll be praying for you.
My Grandfather was blind. Growing up I watched how difficult it was for him to get around the house or other unfamiliar places such as church, stores and family members homes. He did not go blind because of this disease, but because he had diabetes. I am so happy for the awareness you are bringing to people about this disease and about blindness in general. You are a truly beautiful person for all you do for people.
Frankly, i had no idea what Choroideremia was until i read this. Thanks so much for sharing this with us Nikki! Love you!
I just read your post….and I RARELY reply to these things, but this touched my heart. The disease EJ has seems to be the opposite of Retinitis pigmentosa. I had a brother-in-law (1st marriage) that was diagnosed with RP at the age of 15. He was probably born with it, but up until Driver’s Education, everyone thought he was clumsy. By the time I met him, he was 21 years old, considered clinically blind, unable to drive, completely blind at night. My husband and I took him everywhere we went, whether to a concert or even a vacation to Florida. I know that people found it odd at Disney World when I would be holding my husband’s hand and my brother-in-law’s hand at the same time. Bruce needed me to help guide him at night. I took him shopping to pick out clothes each season change and I even learned to read Braille to translate his letters and cards when he sent them to family members. They still have the Uno cards that I put Braille on so he could play with the family on holidays. He is independent and living in a large city. He stills go to concerts, he goes to the Indy 500 (I know this because he always finds my Uncle Roy there). I remember asking him one time, which would be worse…never being able to see or losing the ability and knowing what he’s missing. He said he would rather remember what a blue sky looked like than to try picturing something that he had never seen.
Sorry for rambling, I just wanted to share Bruce’s story…
thank you so much for writing this. he sounds like a great guy. i was originally diagnosed with rp. so its closer to chm than you think. i wish you and your family all the best and heres to a cure in the new year!
I just put it on my Twitter in 2 parts so hopefully people will read it. I really hope EJ finds a solution or a least a way to slow this down. Good luck to him and his family.
I never heard of this before, my eyesight has been getting worse every year and I know how difficult it is to not be able to see things around me, but I do not have this disease so i will always be able to rely on contacts.
It is so amazing to see young Hollywood actresses speak out about different things such as this. It shows that they do care and want to make a difference. Its actresses like you that I look up to.
To Erika, please ask your doctor for an MRI. I have brain cancer, and the initial symptoms of my tumor were vision disturbances like you describe and migraines. I’m not trying to scare you, but don’t mess around with it, please. I had excess spinal fluid on my brain causing optical nerve swelling and vision issues. If it had gone on, I could have lost vision. This condition can be several things, but it’s serious.
[...] Did you guys bond by talking about being vampires? Ha, no! (Pause) Okay, yeah, kind of. We did. But even though she’s so great on True Blood, she’s so different from that character. She’s so smart, and a little bit introverted, and just so thoughtful about everything. I actually wrote a story about her and her boyfriend, who’s also wonderful, on my blog. [...]
[...] Did you guys bond by talking about being vampires? Ha, no! (Pause) Okay, yeah, kind of. We did. But even though she’s so great on True Blood, she’s so different from that character. She’s so smart, and a little bit introverted, and just so thoughtful about everything. I actually wrote a story about her and her boyfriend, who’s also wonderful, on my blog. [...]
[...] everything. I actually wrote a story about her and her boyfriend, who’s also wonderful, on my blog.How often do you blog? As much as I can. Writing has always been very important to me.I love [...]
I’m so happy that you posted this blog. I’d never heard of this disease and this blog actually does raise awareness. I posted it to my twitter account. I look forward to more of your entries and cannot wait to see the upcoming Twilight Saga conclusions. Have a great one and thanks again for the info.
[...] Did you guys bond by talking about being vampires? Ha, no! (Pause) Okay, yeah, kind of. We did. But even though she’s so great on True Blood, she’s so different from that character. She’s so smart, and a little bit introverted, and just sothoughtful about everything. I actually wrote a story about her and her boyfriend, who’s also wonderful, on my blog. [...]
I saw a small interview of yours on Nylon.com and clicked the link to this just to see what you were up to. I was surprised with your interest in writing and how you keep it up with what i know is a busy schedule. Bravo. But on a serious note, this topic alarms me. I’ve had migraines since grade school and more recently i can’t get an accurate rx for my eyes. They seem to be getting worse, i have light chasers, sensitivity to light (i can barely stand the sun)… After reading this though I at least have a series of questions i can ask my doctor about and a direction i can focus on to make sure i’m ok.
Thanks to you Nikki, and my best wishes to EJ. No doubt Deborah will keep that man on his toes
[...] Did you guys bond by talking about being vampires? Ha, no! (Pause) Okay, yeah, kind of. We did. But even though she’s so great on True Blood, she’s so different from that character. She’s so smart, and a little bit introverted, and just so thoughtful about everything. I actually wrote a story about her and her boyfriend, who’s also wonderful, on my blog. [...]
I knew about CHM before and was deeply toched by this story. My dad is blind in one eye and has now lost sight in the other, so I have seen how difficult it can be and how it complicates things in your life. But the support that you get from loved ones is stronger than anything – love conquers all! Thank you so much for sharing. You are a beautiful person, Nikki. And EJ is in my prayers.
Fantastic info, and good to know to keep watch for. What I hate, is that someone has to go through this before it’s discovered or known. Anyones’ struggles are heartbreaking, but we all struggle in some way and when we walk away stronger…it’s the good of that that we share with others to help keep them going. So Nikki, thank you for sharing THE STRENGTH of those around you and announcing that donations are needed. Every little bit helps. ♥
Hi EJ, hi Nikki, hi Deborah,
First off all thanks to Jewel, the first poster in this thread, for bringing me here.
What Nikki told us here touched me so much. I am in fact a great fan of both Nikki and Deborah. I love Deborah in True Blood, … Deborah you’re amazing!
I never heard of this disease and I am so sorry about what happens to EJ.
But remember EJ, you’ll always see and remember Deborah’s face … whatever happens. She’s just so beautiful!
I wish you all the best of luck, love and happiness.
I know you’ll have the courage to go on.
(Sorry for my english)
Best always
Hi Nikki,
Let me be the first to say thank you for this site. I think it’s amazing. Also your brother’s pics are great. I heard you’ve been added to the Twi_Tour Chicago in two weeks. I’m looking forward to meeting you. Take care and safe travels. HUGS!
Jewel
I hope you find enough money to start researching for a cure or a way to slow down the progression of blindness caused by this disease. Until I became a fan of Deborah’s, and read everything that is on her facebook page, I had not heard about this disease.
I wish you the best of luck! As soon as I am able to spare some cash, I would be more than happy to contribute to this inspiring fundraiser.
NIkki,
I just wanted to say it so good to see such a genuine person as your self. You have not let the fame and money get to you and I admire that !! you are great don’t let anyone tell different.
I knew about this deases.I know how terrible it is.I really hope that people who read this will try to be more polite and uderstandable with them who have it.I wish EJ all the best.Be strong!
Thank you for sharing this, both you Nikki and Ej and Deborah, I had never actually heard of this disease, I am touched by EJ’s determination and I really admire him, I’m sending all my best thoughts and wishes to you all x
Nikki, Thank you so much for sharing EJ’s story with us. You have once again amazed me. You are truly a strong, loving and giving young woman.
EJ, Thank you for allowing someone to share your story. My adopted daughter is sight impaired so I know from experience the struggles on a daily basis that you go through. Cassandra was diagnosed at birth with cataracts, and a bad decision to do immediate surgery left her blind in one eye. Her disease like yours continues to erode her eyesight. Still she meets everyday head on. I pray that you and Deborah have the opportunity to experience all life has to offer, and that through the sharing of your story we are able to raise enough awareness and funds to seek the answers needed to slow the progression of this disease and eventually find a cure for it. I will do my part and I hope that everyone who reads your story here will do the same.
Nikki, I wanted to congratulate you again, you are one of the women who make us raise your head and move on, one day at a time, Ej your story has affected my life, thank you for changing my point of view, today’s day I will see the world through different eyes, compelle again, very successful
Nikki,
Ej his story was moving, I’m from Brazil and my sincere wishes for you and your family, it is interesting to see that every decade that passes new diseases emerge and more people suffer with them, I am struck by the fact of pharmacies and of doctors doing nothing, the day that a disease like this affects any family they will want to find out. What makes me more sad is the lack of respect in the world, I’ll be rooting for you in mind Ej, success Nikki, your site is amazing.
With love from your Brazilian fan
Kisses, Rachel
that was very sweet of you to write this. i am sure he appreciates it. i enjoyed learning about something i never knew about. you’re a good person Nikki.
HI Nikki,
I enjoyed reading your blog about EJ. My father is blind. His disease is called Retinis pigmintosa or RP for short. It sounds very similar to what EJ has. As with EJ’s disease the woman are the carriers and the males are the ones affected. It also affects your peripheral and night vision at first. My father suffered most of his childhood cause no one could understand why he would bump into things or not see well at night. When he was in High School he was finally diagonised. For most of my childhood he could see but it continued to get worse and he knew he would eventually be blind. About 14 years ago that is exactly what happened. So he has never seen what we look like as adults or what our children, his grandchildren look like. But his blindness has not stopped him, just like it looks like it will not stop EJ. My dad is one of the smartest men I know. He does so many things and constantly is amazing people. I am sure there are times where being in complete darkness must be hard for him, but he keeps a postive outlook. Nothing will prepare EJ for what is ahead, but tell him to just think positive and it sounds like he has a good woman on his side which always helps.
I live in Chicago so hopefully I will get to cheer him on along with all the other runners at the marathon!
thanks jennifer!!
ive heard that there are dozens of different types of rp. ive never heard of just women carrying and passing to the males. except for chm of course. i think women can go blind from rp. im second guessing myself now but i would encourage your father to get tested by a specialist and im curious about you and your children. have you guys been tested?
as for cheering me on during the marathon? yes please i’ll need it. thank you so much. my best to you and your family.
ej
Hello EJ!
Yes, my dad has been tested before. Infact, he has been seen several times by the main research doctor in illinois for RP for many years now. I’m sorry if I mis-spoke, you are correct, woman are carriers but can also get RP. In my dad’s family though it is mostly men that have had it. My sister and I do not know for sure if we are carriers since we have never been tested. We both have children but they are all girls. I have often wanted to get tested, but never had. Yes of course I will cheer you on at the marathon! A few years ago we walked in the foundation for fighting blindness walk. It was a great experience! I wish you all the best! My dad is one of my hero’s and I am sure you sharing your story is inspiring others just like my dad does.
EJ, Hi! I am Jennifer’s sister. I wanted to invite you to see my fathers blog. Blindwithasite.blogspot.com and just in case you would like to talk to someone who knows what your going through you can contact him through there.
Thanks for taking the time to share EJ’s story. My heart and prayers go out to him and those stories shared in these comments.
I am happy to donate and appreciate my sight a bit more today.
Just this week I heard Jennifer Rothschild speak via Max Lucado and was touched by her story which is so close to EJs. Here is a link to her website in case EJ, Deborah, you or your readers are looking for more support and encouragement.
http://www.jenniferrothschild.com/index.html
I commend EJ for sharing his story, and that of his family. The Lord works in mysterious ways: Deborah sharing his story with you, you meeting EJ, and you all deciding to post his story. I am sharing the link to this story and heading over to EJ’s site. God Bless EJ and his family and all efforts to spread awareness and find a cure for this disease.
First, Nikki you are amazing. And it was a good idea to but this on your website, because people love you and twitlight so of course they were going to come on here. secondly, that story will make people feel less alone, and it was a AMAZING story (: xx
First of all, Nikki, I must say that you are amazing… I just found out about your website and I have to say that you’re using the power you have over your fans (such as me
) only for the best way possible.. You’re amazing 
Thank you for posting EJ’s story… It was so touching and important to get the word out there… So thank you for that…
Love you lots,
Lior
What a beautiful story! Thanks Nikki for posting EJ’s story. EJ you are in my thoughts & prayers! I appreciate your courage in bringing awareness to CHM. You can tell you’re a beautiful person and you will always be with or without sight. God Bless.
Really…that is a beautiful story. God bless Deb and EJ for the future and thanks to Nikki who blogged this.
[...] Read the full entry on her website iamnikkireed.com. [...]
Thank you so much for sharing their story! There are so many things in life that we need to always be thankful for. I, myself, have a degenerative eye disease which will eventually require me to have corneal transplants to keep any vision. I noticed my better than perfect vision getting worse while playing soccer in high school. It wasn’t until college that I was finally diagnosed. I am so grateful for every moment that I have with even my imperfect vision–and wear my glasses with honor and gratitude in my heart that they help me see. I hope to continue working as a nurse as long as possible before needed the transplants. I love my favorite movie vampires and hope that no one has to live with the limited vision that those contacts gave an amazing group of actors!
My prayers are with EJ and his whole family!
This is truly a touching story. I have never heard of this disease, but after reading your blog entry I want to learn more about it. I’m currently study biology at Florida State and anything medically related really sparks my interest. Hopefully some kind of treatment will be developed so that this can be treated early enough to where something can be done, it would be very sad to know that you are a carrier for this disease and could do nothing about it but simply wait for it to take hold (speaking for CJ’s young nephews). My heart goes out to this family and maybe in the future after I graduate I can be a part of some research group to help develop treatments for this!That would be really amazing.
Love. Hope. Respect. Support. Peace. to you EJ and Deborah. You deserve all of it. I am not a follower of any religion but I pray for a miracle. Thanks for writing this blog. It makes me think how much I take for granted.
My mom has worked in Pharmaceuticals all my life, so sadly since I was little I have known how little gets done with unknown or not well known diseases. So many people are effected by them, and yet it seems like their voices are still unheard. Thank you so much for posting this and informing me about another cause I can help out with. Save the world one person at time right?
Thank you for shedding more light on this rare disease. My brother has Choroideremia and because of it’s rarity many do not know about it. It’s life changing for both the individual who has it as well as the family and friends. Thank you again!
katie are you a carrier? i encourage your family to get in touch with the choroideremia research foundation. all the best.
ej
EJ’s story is very inspiring. I thank you for bringing it to our attention. It has me thinking about the money needed for the clinical trials. Can you imagine how much could be raised if every Twilight, True Blood, Nikki Reed, and Deborah Woll fan donated just $1? I think the results would be amazing. With everyone helping out bring awareness to Choroideremia as well as assisting in the prevention of the disease’s progress, the money and treatment could be licked in no time. The quality of life for those with degenerative eye diseases would then be retained. Those beautiful moments in life can be remembered more vividly and colorfully.
I just posted something like this on ONTD and Facebook. Just donated $2 myself. I would love to see this snowball.
ps I am also a mother of 5 boys and so glad for now that I can see their beautiful faces
Hi Nikki I have an eye disease where I will prob go blind some day it is Keritaconus (not sure the spelling?) my eyes are football shaped instead of round, well it alot to get into anyway I was touched by EJ’s story my prayers are with him and his nephews, (ps I have seen Deborah on True Blood so i know who she is in that sense, of coarse i was suprised she was going thru so much and so family orientated) are EJ’s nephews also Deborah’s kids? or from another sibling? prob non of my business, but anyway I wish them all well they look like a really loving, kind hearted family
deb does not have kids nor do i. the pics are of my 2 nephews. thank you.
well they are gorgeous nephews hehe
Hello Nikki!
It is exciting to read from your blogs as I love the work you have done as an actress. This is very touching. My mother-in-law, while she does not have this specific type of case you have wrote about, has been slowly loosing her eyesight due to diabetese. You are a wonderful person to have shared this in hopes to help out what many will feel is an important cause. Your friends are lucky to have you in thier lives. Knowledge IS power and awarness is knowledge… I have posted this to my facebook page in hopes of more to read. Stay beautiful in your heart and your your open writings.
With love,
~Julie~
wow so sad
Hi Nikki!
I’m sorry this is kind of late, but I found your blog via someone’s Facebook and I absolutely loved this post! They seem like such a sweet couple and what they’re going through is so sad. I thought it was really cool that you posted this. You seem like a really awesome person.
so true and i like Nikki 2 she did awesome in eclipse and the r going thru a very tough time in the relationship
Spread the word! I just shared it on my Facebook page. This was a moving story and I never knew this existed! I hope my friends will read this and also share the story…”knowledge is power”.
If you haven’t already, please VOTE FOR NIKKI as the most beautiful person in entertainment! They’re not only judging by physical beauty, but also by inner beauty and we all know Nikki possesses both so PLEASE VOTE FOR HER on http://www.portraitmagazine.net/
Nikki I am huge fan that story is really touching you are my favorite character in twilight don’t know why but you are so you know I act,I have done a few plays i did Annie the orphan theres like a mean little girl in the movie i play her Pepper I really love acting singing and playing i wanna be all those things when i grow up i am getting there thanks for reading this comment Bye:)
This is just terrible and unfair. A friend of mine is going blind and I think this disease is what she has too. She lives in France. On her last visit to Greece she was telling me how it made her feel. It’s just plain scary. Ofcourse she is not alone and I am sure EJ’s not alone. EJ your story is inspiring, I wish you and your girlfriend only the very best and I hope the funding situation goes even better then you hope for.
Nikki very sweet of you to post this.
MY husband is also going blind. He has no pressure glaucoma. And there is no cure. He will loose his vision sometime in the future. Not sure when. I continue to allow him to work. I cant take that away from him. In fact I moved back to a small town he was familiar with just so he could continue to drive.
My heart goes out to anyone who is loosing their vision.
Vote for Nikki as the most beautiful person(inside and out!)! http://www.portraitmagazine.net/
That was such an AMAZING story. I hope that one day there will be a cure for less money and that it will help a lot of people. I hope that it doesn’t become a huge disease as well. “To take away someone’s vision is to take away a lot of beautiful memories and experiences, but if being blind is what teaches us to see people for who they are, then I hope the people who are or will become blind with appreciate that.”
Nikki–Thank you for writing this article, it was exceptional! EJ and Deborah–Thank you for sharing your story and all that you do for fellow CHMr’s.
I have Choroideremia as well as my 16 year old son. This type of awareness and letting people know our urgency for funding helps me get through each day.
as an artist losing my sight is one of the worse things i can imagine, thoughts and prayers go out to EJ and Deborah.
My cousin recommended this blog and she was totally right keep up the fantastic work!
Hi Nikki,
This story really is touching, my father is blind and only in his early 40′s. I really hope EJ gets better. Its really inspirational. I feel so lucky for what I have. I also feel thankful. I think its great that you posted this. My family donates regularly to foundations that help people who are going blind. I sort of know how it feels with my dad. Its hard, but I am still thankful i have him. Thank you for posting this.
thats really sad i know a lot of people with that condition and i hope EJ feels better soon even though i cant really do nothing about it i wish i can do something but i will pray and hopefully everything goes well thank u nikki for posting this and ill make sure to spread the word and see if maybe my family and i can help out….very touching and a true blood fan too
Nikki,
Words can’t express how touching EJ’s story is. I will definitely do what I can to help. I will try to spread the word, and maybe get some more people involved. Thank you for posting this on your site. I don’t want to sound ignorant, but I must admit I probably wouldn’t have heard of Choroideremia if it wasn’t for this site.
EJ,
Thank you for sharing your story, it is really great that you are not letting this disease stop you from your dreams. It proves that no matter who you are, if you believe in yourself you can do anything. Please keep pursuing your passion for acting, and I am sure you will meet a lot more people who admire your talent.
Deborah,
I know that you said you didn’t want any recognition, but you are such an inspiration, for putting on a brave face and dealing with EJ’s disability. Nikki mentioned how beautiful you are on the outside, and I must say I agree with her when she said you are even more beautiful on the inside.
THANK YOU to all of you, and I want to wish you luck on bringing this issue forward.
Lorenie
Nikki,
Thank you for posting about this. I can’t imagine what EJ & his family must be going thru. I won’t take my sight for granted anymore. I wish there was something I could do to help
Hey Nikki,
What a great post! I can’t imagine what EJ’s going through, but my dad has a degenerate eye disease as well. Instead of getting the tunnel vision, he actually can’t see in the middle. He can’t see you when he’s looking at you.
My dad’s current vision is 5%. He used to make videos and edit them on a big TV in his ‘lair’, mix music and add comments (and he was so good at it!). But he’s lost the patience for that now, and also, even if he wanted to make videos, the light usually makes it too difficult for him to see properly. He now has his mind set on learning how to take pictures.
He also has a passion for all things music. He’s a DJ at a local radio station and they love him so much that in the new building that they’re moving to; they keep in mind of the light. Too much light means that my dad can’t see a thing, and too little means the same thing.
EJ’s a hero, Deborah is a hero, YOU are a hero and my dad is my own personal hero.
Hey Nikki – what a truly inspirational post you have put here – bringing awareness to something like this is marvellous.
Nikki,
thanks so much for posting this and helping us get the word out. I met Debra and EJ recently – my husband has CHM and my daughter is a carrier. I can’t tell you what finding the CRF and others with CHM has done for us. We no longer search for answers alone.
Dear Nikki
Thank you so much for sharing all your thoughts, ideas and pictures I really appreciate it because it’s like your openning your heart to us… and I just want you to know that I cherish every single thing you post…
Sometimes, fans think that celebrities are just a bunch of perfect people with perfect bodies and with a perfect lifestyle.
But I realize, you’re normal people. Well you’re not just normal…. You’re deep, intelligent and of course… amazing!! And very, very special, I really love people like you…
xoxo
Cris
Your fan from Ecuador.
Oh my gosh… I can’t believe it =(
“Pharmaceutical companies are more likely to give funding when it affects a larger group of people” thats so wrong!! pharmaceutical companies should help people like EJ to make a fundation, cos not only them will have benefits of this, they’ll help a lot of people in the same situation!
oh my god, that sad thing! I never, imagined that! I am in shock at the moment, Deborah, a girl so beautiful, so talented, I never imagined that something so sad happened in her life! Wow, but it shows the example of person she is, while many girls in this situation would have already taken the body out, she did not, instead, is an example of true love, single. Deb always considered a diva, começeri especially after seeing her performance in True Blood, but after that? mean, it increased my respect for others. wish I could help, really. mSQL faith but while there is hope right? then we expect, in the end everything will be OK. kisses of brazilian fan.
i watch you on jimmy kimml live the twilight and i cant belive u got pop in the head i felt so bad bc i love u and kellan
Nikki,
Thank you so much for taking the time to post this. I follow the CRF site as I have 3 teen sons – all diagnosed with CHM. They have sever night blindness and it is hard to tell a teen – no, you won’t be getting your license. I appreciate your posting this on your site.
When I wrote to Deborah Ann Wohl on Facebook, EJ wrote me back. I learned more about Choroideremia. I run the Anne Rice Vampire Lestat Fan Club and since I am bringing back a celebration of Memnoch the Devil for the Ball this year, I suggested to EJ that I could get Anne Rice to sign some eyeballs like she did for her booksigning in Miami for Memnoch the Devil. You see, in the book, Lestat looses an eye in a battle with Memnoch so she signed eyeballs and gave them to her fans. I got her to sign some eyeballs, blue for Lestat and green for Maharet, a vampire who replaces her gouged out eye with her victim’s eyes. We are raffling off the signed eyeballs on Ebay and all money we collect will be donated to the Choroideremia Research Foundation. http://www.cureCHM.org or on Facebook, Bind Fury. The eyeballs are on Ebay under the name Memnoch Resurrection Ball Silent Auction Eyeballs. Suzie Q.
Thank you for posting this! As an affected CHMer myself, I truly appreciate everything that EJ and his family have done to raise awareness and funding over the last seven years. In this past year, Deborah has helped to raise awareness even more! EJ my brother, we WILL get there! With the help of friends and family, we will reach the goal of Saving Our Sight!
Thanks Nikki!!
Cory
I have a similiar eye disease called Retinitus Pigmentosa, which has similiar vision degeneration. They’re 47 different forms of RP and so far there is no cure, just methods to slow it down. Like taking lutein and vitamin A.
Nikki, thanks for spreading the word. Being a devout TrueBlood and Deborah Ann Woll fan, I already knew that her boyfriend had this disease, but I wasn’t aware of the funding needed for clinics or E.J’s entire back story. Good to know.
I haven’t read all 60 comments, but has this post been linked on the gazillion twilight sites??
Good luck!
That’s such an touching and inspirational story Nikki. I hope more people learn about EJ’s condition in the near future.
I think that knowing that this type of things can happen to anyone, even such a nice guy like EJ, makes me think of how it can happen to anyone…….
Nikki you are amazing…..EJ be strong
Thank you for bringing attention to this cruel disease in such a sensitive and moving manner. Hopefully EJ’s bravery and willingness to share his feelings and emotions in dealing with this, as well as those like you that bring light to it, will make the difference and bring about the necessary funding. Thank you also for sharing the links so that we may donate to such a worthy cause.
oh my god.
I’m Almost crying that was really touching
I had red eyes this summer so I went to the doctor
and I was stressing myself out because I thought I was gonna lose my sight But I’m such a dramaqueen It was just some allergic reaction but I never really thought of people who did lose their sight I was like. ‘Yeah whatever they can still hear and smell it’s not a big deal’ but EJ changed me he such a great person
Wish him the best from me!
x.
That’s very sweet of you Nikki. The text was beautiful.
<3
I’m glad EJ wanted to share this.
It’s an awesome text! Poor EJ. It’s not fair that some people have diseases like this, or worse, and most people get to be healty. I’m not saying that everyone should get diseases, just that I wish everyone could be healthy
that is so beautiful. Its amazing actully,
Wow that was truely touching Nikki, I’m glad you could share this with us. I hope that more people can gain awareness of this disease.
I think this story is truly inspirational nikki. I think it is very sad but im glad you posted about his condition. I also want to say that i am a HUGE fan! I think you are very talented and i hope you continue to make movies. I hope you can reply to this question because that would make my day!! What do you like about Rosalie and her personality and how she has changed since Twilight? Thankyou so much for reading this nikki.
This is a really intense story, but EJ is so inspiring. My dad is losing his sight too. It’s not from the same condition, but I can definitely relate. Thanks for posting about this. I want to donate too.
Hi I always likes vampires since I was a lil gurl u should get a twitter so I can follow u 2…..
Thank you for sharing such a touching story. I work with Deaf and some of them also suffer with blindness (Usher’s Syndrome). I look forward to a cure for EJ’s disease, and his adorable nephews. Thanks again for caring, Nikki.
Thanks for sharing such a personal story. I think running blindfold in the marathon is brave and fitting for EJ. Please let us know how he does.
I was diagnosed with type 1 diabetes almost three years ago, and worry every day about loosing my eyesight. Every time I have a headache or my eyes ache or I feel slightly dizzy I spend a moment in fear. I have to think: am I tired, am I bright sunlight, did someone just flash a picture? I search for any reason to explain other than loosing my eyesight. As for now my eyesight remains unchanged, but I am only 26 and have many years ahead of me to live with this dreaded illness. I think EJ is incredibly brave and I wish him luck in his marathons. Hopefully, medical research will continue and in the near future no one will have to loose their sight!
Wow! I started crying while reading it. Touching, sad and inspiring all at once.
They all seem like strong and loving people!
Love from Sweden
I think this is a moving story. I wish I could help with things like this. Its nice that you can tell people about it so that these people can have help getting a voice to be heard better about such an unknown thing.
Than an incredible article!
Thank you for sharing forever.
I love just being here.
Turkey Nazli fan:)
wow, he sounds amazing and he is a postive man.
he is a very lucky man that he got a very loving girlfriend, family and friends. i’m sending lots of wishes and good luck in the marathon.
It is an amazing story, and I hope Mr. Scott can get the help he needs to stop the progression of the disease. You have an amazing heart and thank you for sharing it with us.
Love reading your posts!
I´m from portugal and I did not know about this desease.
I really liked this story . I wish you the best and good luck to everything.
Typo in previous post…wrote ‘oaring’ meant ‘caring’. That’s what you get when you can’t see whole words at one time. Take Care all.
This blog seems to have a lot oaring people. Thank you. If any of you have the time…I’d TRULY appreciate if you would visit my website (jeffbenelli.com) to read my story on Choroideremia and how it’s affected my life and the life of my family. I’d love to hear from you. I have 22 miles to try to run on Saturday training for my next marathon. I only have 2 degrees of vision and I run alone. I put my kids to bed every night with them knowing their dad soon won’t be able to see them at all. Any kind words you can send helps fuel my efforts to run another day in support of this cure. Thanks to all of you.
I wish your twilight costars were more like you. Instead of spending their time looking for another hollywood event to attend so pappz could take photos of them and make E!’S the Daily 10, they should put their fame to good use by promoting or being involve in charities. That’s why I admire you so much. You don’t let all that hollywood BS get to your head and you actually care about things that actually matter. Keep the good work Nikki and we love you!
It’s always nice to see a celebrity use his/her popularity for a good cause.
[...] the rest of this post here on Nikki’s official [...]
Many people struggle for equality the more they do not accept the differences they want everyone to be like her to think, act the same way. I would one day be able to see the world where everyone can live equally without prejudice or humiliation. And yes with the differences. Many people complain about how life ought to thank God everyday for being healthy. It must be terrible to have to deal with something you do not know information is all I loved your post.
I will disclose that everyone can help
Nikki, I just want to sincerely thank you for writing this. My name is Jeff Benelli and I too have Choroideremia. It means so much to have others deem this a worthy cause. I am 44, married and have to young boys ages 8 and 10. I met EJ when he, Ally and Frank were on their cross country bike tour. I have been running marathons since 2005 raising funds and awareness for the cure of CHM. Through my efforts, we have raised around $80,000. I will be running another one on October 16th in Kansas City. I was fortunate to meet Deborah at the CRF conference a few weeks ago. She was extremely nice and sweet and just obviously a wonderful person. Both Deborah and EJ have done so much for this cause. I am extremely grateful to both of them as well. Anyway, thanks again for your kind words! It means a lot.
Have you thought of becoming a writer some day, I think that you are very good at it or should I say you will be perfect for the jobb. Sense you started this blogg I like you more, before I diddn’t really understand you, I can’t say totaly do now either but at least better then I did before.
EJ is a friend and a darling of a man. I love his story and watching his journey. Thank you for helping spread the word!
awww this is such a touching story it is quite sad i think i teard up in 1 part of it! :’(
i could not imagain that! it is terrible! :’(
thank you 4 posting this and like Laurie i will donate!
SO DON'T ASK ME IS UR NAE REALLY RENSEMAE CAS I GET ASKED EVERY SINGLE DAY AND I GET REALLY PISSED! :\ thx gyes! xoxox <3 )
With Love Always Rensemae! xxx <3
(GYESSS B4 U ALL ASK YES MY NAME IS REALLY RENESMAE! I AM NOT KIDDING YOU BUT IT IS SPELT DIFFERENTLY TO THE 1 IN BREAKING DAWN
that is such a touching story and it truly broke my heart i think i may have teared up in 2 part!
i know it may be hard t believe but i am not kidding my name is seriously renesmae it is spelt differently to the 1 in breaking dawn tho)
thank you Nikki reed 4 doing this!
xoxox <3 Renesmae (yes gyes i am not joking my name really is Renesmae
Nikki… What a story. Its times like these that I really wish that I had the money to help the cause… being a single mom, with limited resources, its really hard for me to do though.
GOOD NIGHT MY ANGEL. SLEEP WELL!
THANK YOU!
THANK YOU FOR MAKING ME THINKING ABOUT HOW MY PROBLEMS ARE small and insignificant.
ALSO HAVE PROBLEMS IN VIEWS FROM THE TWO YEARS, BUT THAT IS NOTHING affected me deeply.
THANK GOD FOR THAT.
THANK YOU FOR SHARING SOMETHING SO IMPORTANT.
LOVE YOU AND YOUR WORK.
KISSES IN YOUR HEART.
i didn’t know about this disease but i realy hope Ej and every person how has it can find the support they need in society and that scientists start working o help improve the quality of life itas they should instead of destroyin it.
Nikki I admire you more every day you’re great!!
all my love and suport for EJ and his family.
luckilly i don’t have problems with my sight,except when i work too much i’m tired,so i wear eyeglasses but i kind of know what he’s going through, my granny is almost blind….she sees only shadows and she can see if the lights are on or off,but she can’t see anymore so instead of watching TV she just listens….it’s kind of sad but she gets to do anything she can…well she old and has other problems,but she does what she can…
for EJ and his nephews i hope there will be soon a solution because it’s really terrible for a young man to have any disease…
P.S.:i love you Nikki,you’re great and i think that even if “Cullens” have contacts you do your job amazingly,even if someone like peter has to it your head!!!!!!!!!!!!!!!
Feddy
It’s my first time to know about this disease.. No movies and no news… I hope there are people who will help and donate.. And so that those people who acquire this kind of disease won’t feel alone.. Thanks for sharing Nikki, EJ and Deborah..
Can I post this on my blog?
Aww, this is so heartbreaking. Thankyou for letting us know about this story Nikki, it really is amazing and EJ is such a strong courageous soul. Love the site and everything you have done with it so far, brilliant. I will donate to this and tell family and friends the same. PS: Visit Australia soon Nikki
I’ve heard about this disease before,
My teacher told about it once his friend has Choroideremia.
My whole class was touched by it,
and I couldn’t imagine losing my sight,
thank you for sharing your story,
it’s really touching.
(& sorry for my bad english)
xYasmine
Cute pictures!
Thanks so much for shearing this. It’s hard to really know what’s happeing and what’s going on when you just hear it from someone, you know? But now I kinda really understands. Again thanks for shearing! It was really thouching. And I’m so greatful I have a good sight, but I wil never forget the ones who’re not that lucky. It’s so sad. I know many who have a bad sight, almost blind.
Hey Nikki and both EJ and Deborah if you’re reading this,
this really is one of the most touching articles I’ve ever read I have to confess I have never heard about this disease until I read this article. I really feel for EJ and I really admire him for being still so strong and I wish and hope there will be someone who will be able to help with this disease. It has to happen one day.
I am glad that you, Nikki, made an article about this as I am very interested in reading more and spreading awarness. I was wondering if I could write about it on my fansite (n-reed.com) but from what I heard, I’m not really sure since this site isn’t ready yet?
Best wishes to all who has this rare disease.
This story should be known. It can really open people’s eyes.
This story is so touching. It makes you realise the things that we take for granted on a day to day basis. I really felt for EJ as i read this story, he seems like a lovely person.
i feel sorry for him, i really do, but when i looked at the pics all that registered in my mind was that he was a cubs fan!
Wow, Nikki. That is really heartbreaking, but EJ sounds like such a trooper. A really very inspiring person. You are truely amazing for doing this for them, and for us also.
Thank you for the insight, and I’m so very sorry that this is happening to somebody you care about. I certainly hope he is able to do/see those things in time!
I just read this blog, and think it is truly a great thing you do Nikki on making people aware of things that they may otherwise never have thought or heard about. Some people hear about things and never realize or care what it may mean to someone else who is dealing with those things. I had never heard of this disease before but am glad you as well as EJ shared his story, what a scary thing to have to go through, and seeing his nephews tore at my heart. I have 3 children and could not imagine them going through anything like that, it broke my heart enough when we almost lost our child to a food allergy that at the time we did not know about. It can be any number of things that people hear of and since it does not effect them they turn a blind eye so I commend you on not doing so and posting this story. I will follow this disease and would definetly be willing to donate to it’s cause.
Amazing that I’ve read this story twice, and it still moves me to tears. I’ll definitely find some way to donate! Because it’s for an amazing cause! I feel for Deborah and EJ. And I hope that everything works out as well as everyone expects.
xx Cherolyn
Thank you, Nikki and all of her readers. My family and really appreciate the support and the help.
best
EJ
I cannot imagine having to deal with something like what EJ has. I have a few friends who have various ocular diseases and they too are going blind. One has had cornea transplants and giant needles poked in his eye, all to no avail. I sincerely hope that they get the funding they so desperately need. I’ll help spread the word as best I can.
Oh my gosh, this almost made me cry. Thanks for bringing awareness to this disease, Nikki. Send Deborah and EJ my love, sounds like they need it.
Megan
This is so touching. It is so important that we bring more attention to these issues. Macular Degeneration runs in my family; in my first year of teaching I had a student who suffered from MD and wouldn’t accept any help. By my second year with him he finally allowed me to enlarge things for him but still refused any technology that would draw attention to him. My respect goes out to EJ and his family for being willing to talk about it and do what they can to bring more attention to the issue.
Thanks, Nikki, for sharing their story. I enjoyed seeing you on Ellen, you made me laugh; you have a sweet personality.
By the way; my student did graduate from high school 2 years ago.
awww cute
awww cute
Thanks for sharing this with us. I had never heard of this disease until now. If you don’t mind, I will share a link to this post on my blog.
I am very grateful that you blogged about this. I have never even heard about it. This story makes my heart swell for those with blindness and other eye disease like EJ’s. I can relate to this story from my father. He is a Leukimia survivor and in remission now for six years. He now has the after disease Graph vs. Host. It affected his vision, but thankfully they have hard contacts that help him see. I appreciate the insight to this disease that is new to me and will be keeping EJ in my prayers.
This blog just tugged at my heartstrings.It’s so tragic I almost cried, I will definitely donate. You should ask Peter Facinelle to tweet a link to this blog. He has over 1.5 million followers.
I just wanted to thank you for doing this and talking about it. My father has Choroideremia (CHM). I am a carrier of this disease.
The more people learn about this the faster a cure can come for all those affected.
So thanks again for all your help. We appreciate everyones help to help us find a cure.
omg…i almost cried when i finished reading this…i think it’s amazing how you’re so willing to help spread the word about this disease, for me, it’s the first time hearing about it. i really hope that more people became aware and God bless EJ, and his two nephews. thank you so much to you and Deborah and ej for sharing this story
That’s *so* tragic. I couldn’t imagine a life without sight but the worst part of this is that he knows it’s going to happen. I was almost in tears when EJ says he wants kids while he can still see them and reads and watches every movie he can. He’s such an admirable person; I admire his strength and determination and will def. donate.
i have bad eyesight too and i wear contacts and i hate the darkness so it must be terrible losing eyesight and not see nothing again, not even your friends and family i can’t live a day without seeing my family so i really wanna help
this story broke my heart i started crying after reading it. i joined the group on facebook and told my friends to i will keep telling people about it, and thank you nikki reed for being a part of this
I have terrible eyesight, but luckily my contacts solve the problem (for now). I cannot imagine losing my sight completely.
Thank you for posting about this. I’ll definitely donate.