Finding support through strabismus groups

plastic game pieces resembling people on image of a globeI often hear people say, “I’m glad I found your group. I thought I was the only one with this problem!” You are not the only one with strabismus. There many of us, and several places online to find us! Different Strabismus Groups meet different needs. (Links below open in a new browser.)

Eyes Apart Strabismus Support group

We used to link to a strabismus group that was great because we could share almost anything relating to strabismus. But there were divisions and hurt feelings because it had no moderator. We created a similar group, Eyes Apart Strabismus Support, but with moderators that can provide a safe environment in which to share. We felt that we are vulnerable enough in real life with our eye problems, without being in a group where there are no restraints.

That is our group, but there are other groups available as well. Here are some of them:

LazyEye An email list for parents of children with amblyopia, strabismus or other conditions associated with “lazy eye.” Adult amblyopes are welcome as well. The purpose of this list is to provide emotional support as well as direction to resources.

vision_therapy This group is for parents, teachers, doctors, and others interested in vision therapy. A friend of mine who belongs to this group says there are a few optometrists who contribute to it regularly also.

Photo Credit: sanja gjenero

25 thoughts on “Finding support through strabismus groups”

  1. My sister has suffered with the social handicap stemming from a lazy eye (strabismus) all of her life. She is now 42 years old and still allowing it to affect her self esteem. Is there a support group she can physically attend with adults who has and/or is dealing with the same thing? She lives in Atlanta,Ga.

  2. Our Strabismus Support groups are web only. I am not aware of any strabismus support groups where people physically attend, but that does not mean there are none.

    Lois

  3. Angelena i have had strabismus for nearly 40 years and the older i get the less it bothers me i dont care what people think this is who i am so like me or lump me and if people would hold it against me they are not worth knowing anyhow , i dont hide behind sunglasses and i am the loudest in the room i have never had trouble dating and have plenty of friends i have the feeling your sister would have low esteem with 20/20 vision having perfect vision is not the answer to everything so dont obsess and enjoy life

  4. I have had strabismus pretty much my entire life. At the age of 15 I had a second surgery that actually worked. Everything was perfect for another 14-15 years, but then my eye started to turn a little bit. I have been noticing this for the last couple of years or so. While it is not nearly as bad as it once was, its not perfect either. I’m at a point where I’m considering the idea of another surgery, but not really sure what to do. Any one else had a similar experience or have any thoughts on this?
    -John

  5. Hi, I have a 6 yr old daughter with strabismus in both eyes most probably due to dyspraxia. She has 20/20 vision in both eyes and they only turn out when she is looking long distance. She also currently has excellent depth perception but we are in the process of deciding on surgery as the opthalmologist has said it has to be done before she is 9. He says she could go through life fine with what she has but that it may get worse. It’s actually not all that noticeable. Do any of you have any advice or comments on how easy it would be for her to live with this condition or on the success or sideaffects of the surgery.
    Thanks
    Emma

  6. Hi Emma,

    I’m 22 and have had two surgeries for strabismus over the course of my life. The first was done when I was 2 and a half, and it was to correct inward drifting of both eyes. The surgeon over-corrected this, though, leaving me with outward drifting eyes..which he pressured me to allow him to fix when I got older. I had my second surgery when I was 19. He was rather happy with this one. I think my eyes look significantly worse than before, and in pictures I appear cross-eyed again. Also, I have what looks like a grayish scar caused by removal of the muscle tissue.
    It is definitely true, that side effects are more pronounced with age. I would suggest that if she doesn’t need it, don’t get it done!

  7. I have blogged on another of Lois’s support group. My right eye turned in when I was two after a high fever. I had strabismus surgery when I was 11, but it was undercorrected. Over the next 50 years, it drifted out slowly until it was out about as far as it could. In October at age 62 I had my right eye corrected. I am very happy with the results. I am here to say that it is never too late. I will not say I wish I had it done earlier because another surgeon may not have done it as well. Pick someone with experience and get references from past patients. Make sure the anesthesiologist is also experienced with your surgeon specifically.

  8. i just had strabismus/amblyopia and i just discovered that i have strabismus in both of my eyes. and dude this surgery is painful when you wake up. but i am so glad i got it and the people i have to thank are….

    GOD,MOM AND DAD, DR.BUSSE, AND MY WONDERFUL FAMILY

  9. I’ve had stabimus my whole life. It varies, so I know surgury won’t fix it for long. I’m 22 and I think after a few years I’ll get the surgury and the find someone real quick and work on my career too before they go crossed again.

  10. This blog is really good because i’m 15 and never met a person with strabismus like myself so i wanted to know if their are people like me and what effects this condition has on your social life.

  11. Well, im glad to have come across this website. I was born with a squint in my right eye but, although I am still very conscious of it, I have tried not to let it wreck my life too much.
    I have tried to carry on a normal life.
    Frankly, I could have done without it an wonder what my life could have been using both eyes and both sides of brain at same time!
    I actually spent 9 years in the senior regiment of the British army. The Lifeguards which is a regiment in the household cavalry.
    I have had girls/women walk away from me on noticing – BUT I have still had quite a few girlfriends, mistresses and been married twice and have 4 (normal) daughters.
    I have been driving for over 30 years and started off on motor bikes, the last one being 1000cc. I have, as now, owned several motor cars and still drive every day, infact I drive a mini-bus – 9 seats – every day for a large cleaning company and everyone thinks I am a very good driver!

    I have had a couple of opps, one when I was quite young about 2 or 3 and wore an eye patch. And another when I was in the army… No cure.
    Im stuck with it!
    My first wife had a corrected squint and looked fine and one of my girlfriends also had a lazy eye too – but I still thought she was very sexy and attractive..

    The best we can do is to carry on and live as normal a life as is possible.
    Paul

  12. I think it does destroy your confidence a bit but a lot depends on what kind of character and sense of humor you have.
    Its easy to blame every wrong thing on your life on having a bad eye – but I have often found that the problem was actually a totally different reason.
    Paul

  13. I am male and now 26.When I was 4,I was hit accidentally in the left eye by an airgun slug.The result was that I lost my binocular vision and the vision in my left eye is about 20%.This slowly led to strabismus and now it is quite pronounced.I was born with normal eyes but still I never knew how it feels to see with both eyes together and I would not in this life.I consider myself lucky that I experienced very little name calling at school and this handicap and has not limited my life in anyway.But when it comes to opposite,my confidence is shot to hell and I am simply cannot look any girl, or for that matter, any person in the eyes.My feeling of inferiority refuses to go away.I don,t want to take the risk of corrective surgery coz my vision cannot improve and also I don,t want surgery to make me acceptable to girls.
    I am more or less resigned to spending my life alone,sulking and miserable.

  14. Yes Zeeshan, I know how you feel. I am also 26, i’ve had 3 unsuccesful surgeries and as I get older the tougher it gets and the more preassure I hold. Avoiding people, sitting in a corner, look at the floor when you walk, not being able to break the ice,etc..is worst than any solitary confinement. And having your mind play and replay it all day long drives you insane and ADDish. I’m in your shoes and I am sorry to say that I have no advice or words of what do you call it, nevermind…

  15. I have strabismus. It was in both eyes. At 18 months I had surgery in my left eye. I grew up with thick glasses and being teased until I was in middle school. Contacts became available and gave me a new life. I was able to meet boys in high school and still was teased, but not much.

    I always thought, if I could just have surgery in the other eye, I would be ok. When i was 28, I had the second surgery. The surgeon didn’t tell me that my eyes could get worse. They did. Now, instead of my eyes going out, they go up. It sucks. I’m an actor and have trouble getting work. I don’t know if it’s my eye, or me.

    I learned of Vision Therapy after my second surgery. If I had learned of it before, I don’t think I would have had the surgery.

    With that being said, I REFUSE to let this control my life. It is not easy to deal with, but I have to think of the positives. At least I can see. In the Mayan culture, crossed eyes were seen as a sign of God and beauty. I have to focus on the good things and believe that God is so good, that the right person will love me, my crossed eyes and all. I am so happy to be able to share with all of you and have people who can relate to what I go through. You all are beautiful, special people who are enduring what many could not. I pray that your eyes become a gift to you.

    FYI: My idol, Forrest Whitaker (he has an eye problem and is an Oscar winner.)

    PRESS ON!!

  16. I have strabismus aged 27- exotropia with a dash of hypotropia. (Looks away from my nose and down) It is a blight on ones confidence. About one in fifty people mention it which either means it’s very subtle or the other 49 are too tactful to point it out! I might be eligible for more surgery but there is a danger of an over correction from divergent to convergent. I don’t consider myself particularly succesful with women and I would love to ask them- is it the strabismus or am i just boring and ugly, strabismus or not?

  17. I’m 43. I have strabismus. I was born with it. It disappeared while I was a teenager, it came back when I was around 26. I married beneath me, I settled because of it. I hate my life because of it, I’m suicidal most of the times. I have a 10 year-old daughter who, THANK GOD, doesn’t have it. I dread she might get it in time. It’s like the worst curse possible. I think I consider all other curses and disesases more bearable than this one. People look at me for about a sec and then just look away and make that noise that announces some sort of urge to spit or vomit or sth. I simply feel awful. No matter how much I keep counting my blessings, my life’s a mess because of this terrible misfortune.
    Please, write back whoever is out there and know what I’m going through – I desperately need support!!… My heart goes out to you all, all of you who suffer the same torment as I…
    Lumi Ilas from Romania

  18. Strabismus has been absolutely horrible for me. Childhood, school–grade and college, years in the workforce, etc have all been somewhat influenced/defined by my eyes. I’ve had a couple of surgeries, and am getting better; but it still persists. The worst aspect (for me) regarding its influence has been dating (or lack of). I’ve heard the comments and seen the looks of disgust, but press on. I have to agree with the post saying it is the ‘worst curse possible’.

  19. I may have it better than most, only my left eye has a problem. It will not move left so I have to walk around with my head pointed a little to the left to see forward. For the most part I can get away with day to day social interactions.

    Girls, yhea that’s the whole kicker. I seen a lady I wanted to talk to in the laundry mat and where she sat down I would have had to sit on her right side, thus any eye contact would have been cross eyed. How would you like to be siting there and some guy sits down looking at you like that? You lose all attraction. Or if I had no eye contact I would still have been creepy.

    Good luck to everyone, I am thankful I can at least have some eye contact if I use some planing. But to people who don’t know me I probobly come off as a little odd. Over the years I just look at people with the cross eye if they are to my left so that they know. But I have a hard time meeting women in out and about places. Women are the only reason I even care about the eye anymore.

  20. my bro is suffering from this disease .then i want to know is he can appear as a handicap please tell me on fb or on this site

  21. Yeshpal, In the U.S. having strabismus does not qualify one for handicap status or disability. I think it is the same worldwide. Those who are legally blind (no greater than 20/200 in both eyes when corrected with glasses) do qualify for disability in the U.S. Also, according to the first link below, “If you do not meet the legal definition of blindness, you may still qualify for disability benefits if your vision problems alone or combined with other health problems prevent you from working.” However, having amblyopia with blindness in one eye alone does not quaify, and neither does the social trauma or difficulty finding employment that some people experience because of their turned eyes.

    Here are some links I found with a google search. Government explanations are sometimes hard to read through and difficult to understand. The best thing to do is to have your brother get a vision exam from his Optometrist or Ophthalmologist. After the exam, the doctor should be able to tell him if he qualifies for disability by U.S. (or your country’s) guidelines. You can also call the Social Security Administration at (800) 772-1213 for further information, or visit your local Social Security office or Department of Human Services if you are in the U.S. See the links below for further info:

    http://www.ssa.gov/dibplan/dqualify8.htm

    http://www.state.nd.us/robo/projects/medicaid/510_05_35_100.htm

    http://www.eeoc.gov/facts/blindness.html

    Hope this helps!
    Lois

  22. Sooo, i guess that know-one hasposted on this site in a long time…I too have suffered from strabismus, i beleive that i inharented it from my great-granmother…
    As i have gotten older, i am now 33; I have noticed that my eye has gotten worse! I am looking deeply into surgery to try and at least ease the problem, if not fix.

    God bless all

  23. Andrea, I hope surgery works well for you if you decide on that. Vision therapy is another thing you could try. Click “eye surgery,” or vision thereapy doctor” on the left to search for these specialists in your area. You may also want to join our Eyes Apart email Strabismus Support Group. To join, click the purple button at the top of the page.

  24. What surgery assistance can I get for my left eye divergent squint,I need one,I am a Nigerian,44 years old,I had one surgery in 1997 here in Nigeria.

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