Finding support through strabismus groups
Written on November 18, 2006 – | by Lois (admin) |
I 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 open in a new browser.)
Eyes Apart sponsors two Strabismus Support groups:
Eyes Apart Strabismus Support 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 here at Eyes Apart, but with moderators that could 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.
Strabismus Hope Offers hope for the struggles of strabismus from a Christian standpoint. All are welcome, not just Christians. This group is also sponsored by Eyes Apart, but the difference is that at Strabismus Hope we are able to share more freely how God helps us through our strabismus struggles, helpful Scriptures, etc..
Those are our groups, 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.
Usenet sci.med.vision Another friend shared the link to this Usenet group recently. I was fascinated to see that the old Usenet groups many of us remember are still alive and well! They are now available through a Google groups interface. This one is described as “Human vision, visual correction, and visual science.”
Strabismus, exotropia, esotropia, lazy eye, crossed eyes The name of this group says it all! This group was recently started by the person who provided the Usenet link above. He wrote that “I intended mine to be a ‘portal’ to the sci.med.vision newsgroup.” He has some other strabismus links there as well, along with “tips about how to best use Usenet and Google groups.”
Photo Credit: sanja gjenero
12 Responses to “Finding support through strabismus groups”
By angelena on Nov 29, 2007 | Reply
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.
By Lois (admin) on Nov 29, 2007 | Reply
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
By andy on Dec 26, 2007 | Reply
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
By John on Jan 24, 2008 | Reply
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
By Emma on Jun 17, 2008 | Reply
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
By Tia on Jun 23, 2008 | Reply
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!
By George on Feb 18, 2009 | Reply
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.
By andy hoffman on Jun 7, 2009 | Reply
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
By Jack Fernandez on Sep 11, 2009 | Reply
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.
By Taiwo on Oct 8, 2009 | Reply
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.
By Paul Edwards on Jan 10, 2010 | Reply
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
By Paul Edwards on Jan 10, 2010 | Reply
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