Posted by barrielcav on 7/6/2001 at 2:23 AM
As a parent of a young son with retinoschisis, I'd like to hear from other parents of children with this condition, specifically, how has the disease progressed, how is your family coping, which doctors are you seeing? Thank you, Barrie
There are currently 29 replies
juvenille retinoschisisPosted by reversole on 8/28/2001 at 8:06 PM
My name is Ryan and I am a 24 year old husband and father. I am the sole income of my family and make above the average median income for the area of California I live in. I enjoy my job as a computer programmer, and also love to read.
I also have Juvenille Retinoschisis and am only able to read the second line on a standard eye chart with the best glasses possible! I don't exactly know what my parents are going through, I do know it's rough for them, but your child is lucky to know at such a young age. I just found out 2 months ago, agter spending thousands of dollars trying to get my stigmatisms fixed!
I am going to see Dr. Hickenlively at UCLA Med. Cntr. on 09/04/01 for an exam to see if I really do have RS. If you or your son need any advise or just have some questions e-mail me at email@example.com and I'll be glad to do what I can!!! Good luck!!!
RetinoschisisPosted by jlunn on 9/18/2001 at 2:27 PM
I also am a mother and carrier of retinoschisis. I live in Omaha, Nebraska. I have 2 sons with this disease and my father has it also. My father thought he had macular degeneration. My oldest son was 4 when I realized he needed glasses. After several doctors visits and 2 specialists it was discovered he had retinoschisis. At the time I was pregnant with my 3rd son, who also has it. My 50/50 odds of passing this on to my boys, blessed me with 2 out of 3. My boys both have very poor vision in their right eyes 20/200 and left eyes are 20/80-100. My oldest son had a retinal detatchment last summer, it was repaired and restored some vision. We see Dr. Chalko at the Univ of Nebr Medical Center, but he has recently moved to Wichita, Kansas. We are still looking into whom to see. He did a wonderful retinal reattatchment. I see many struggles ahead for us. I maintain a positive attitude and I don't make over this as a handicap. I encourage my boys to do their best and look to the future with optimism. I am not sad, I just foresee obstacles ie. driving, dating, college, employment. I have hope for research and I talk to my sons openly about all of it. As I mentioned my father had it also. I was raised in a very normal environment and never saw him as being handicapp, it was only an obstacle. I hope this helps. Feel free to email back. blunn1@Home.com. -Janice
Re:retinoschisisPosted by tproctor on 1/16/2002 at 7:08 PM
Barrie, my 9 year old son was diagnosed just today with retinoschisis. At first we were told it may be stargardts and we were really frightened for him. Now, we don't know if we're "better off" with retinoschisis. We're just now looking into it. What progress have you and your son made and do you have any advice for us?
Re:retinoschisisPosted by amandas_friend on 2/28/2002 at 8:08 PM
My situation is a little different...I am 16 years old and it's my friend who has questions. She is 17 years old and her baby boy is 5 months old. He was diagnosed with this disease 2 weeks ago, and they're still not sure of the exact amount of eye sight he actually has. Not only that, his father walked out on my friend as soon as they found out. She wants to speak with other parents of kids with this disability, and she wishes to know more about it and she basically wants to talk with other people who understand where she is coming from.
An old hand!Posted by Andy on 7/20/2002 at 6:48 PM
Hi to anyone interested in Retinoschisis!
My name is Andy and I was diagnosed at the usual age of 6 with X linked retinoschisis (although at first they thought it was Stagharts Disease).
I do feel so sorry for parents - especially Mothers, because I know that my own Mum felt 'guilty' because of the genetic asoect of this disease, as if anyone could be held accountable for their genes!!!
I am now 47 years old, registered blind, but with some useful vision, as well as 47 years in which my brain has become extremely adept at using the limited vision its got.
My non medical view is that although the eye is a fantastic organ for collecting visual information, at the end of the day it is the brain that processes that information, and like a computer 'cleaning up' a fuzzy photo, it can make use of even the smallest amount of information. Even the best of eyes can be deceived if the brain can be conned!
I have been a teacher and in business, and I am studying for a PhD in Psychology, and yes lots of problems. None insurmountable though, and I must say that, although my life has been defined very much by my vision (or lack of it!) I have no regrets at all. I am very happy with my life, despite haviong shared it with this strange disease.
Hope this is of interest.
Best wishes to all
Re:retinoschisisPosted by mama2 on 2/28/2003 at 5:21 PM
I just want to post a few words of encouragement for you all. My husband, age 37, has retinoschisis (which makes our daughter a carrier). He was diagnosed at age 2. At 6 he refused to go to blind camp insisting that he wasn't blind. He's the most wonderful, intelligent, brave man I know. He owns a small boat and knows the local waterways like the back of his hand.(he doesn't go out alone) He skis better than I do (although I'd never tell him that) and takes ju jitsu. He is in absolute top physical condition. Did I mention that he is legally blind? He can see light in one eye and less than 20/200 in the other.
My advice to you is to do like my in-laws did and do not hold your son back from anything. Grit your teeth and let him ride that bike. Keep tossing that ball until he hits it!
As far as how the disease has progressed...he had some surgery as a child which may have done more damage than good. There has been no progression since then.
There is a doctor at Wills Eye Hospital in Philadelphia that tracks families with retinoschisis. If I remember correctly his name is Dr. Tasmen.
Re:retinoschisisPosted by CAROL GAMILL on 8/25/2003 at 3:28 PM
HELLO, MY HUSBAND HAS RETINOSCHISIS, HE WAS DIAGNOSED AT AN EARLY AGE. HE HAS 1 BROTHER, 1 COUSIN, AND 2 NEPHEWS POSSIBLY 3 NEPHEWS THAT HAVE IT. WHEN I MEET HIM HE WAS ON DISSABLITY BELIEVING THAT WAS IT IN HIS LIFE, BOY WAS HE WRONG. HE NOW HAS A FULL TIME JOB IS GOING TO SCHOOL, AND WITHIN 2 OR 3 MONTHS WILL BE DRIVING, DUE TO BI-OPTICAL DRIVING. HE HAS COME TO REALIZE THE ONLY THING HOLDING HIM BACK IS HIMSELF!!! ENCOURAGE YOUR CHILD TO BE ANYTHING THEY WANT. THE ONLY THING TO ENCOURAGE YOUR CHILD NOT TO DO IS NOT TO RIDE A BIKE, PLAY BASEBALL, OF FOOTBALL WITHOUT A HELMET. LET THEM BE A NORMAL KID, AND REMEMBER THERE ARE A FEW LIMITS BUT NOT AS MANY AS THERE USED TO BE. GOOD LUCK TO YOU AND YOUR SON. CAROL AND ALEX GAMILL
Re:retinoschisisPosted by SandeM on 9/25/2003 at 2:41 PM
Thank You all for your words of wisdom. I have 2 sons and both have Retinoschisis. I also have a daughter with perfect vision. My sons were diagnoised at ages 3 and 5 (now 6 and 8 ). They are seeing Dr Micheal Trese in Detroit, Michigan. He has been great. My oldest son is legally blind but that does not stop him. Some day he is going to be a Paleontologist (Dinosuars). My younger son has no cenral vision in his left eye but sees very well in his right (20/45). He struggle in his first year of Kindergarten but is doing very well this year. We let them be normal children, they just can't do things that they could get hit in the face or anything like that. They play a lot of video games which are good for hand eye coordination ( Recommended by a Vision Therapist). We just keep positive. You never know what sceince will be able to do in 10 years.
Re:retinoschisisPosted by andyflack on 12/11/2003 at 5:14 AM
I am a 21 year old young man and i have just this week been told that I have x-linked retinoschisis. I have read in a number of articles that the disorder is usually atable after the age of about twenty. Does anyone know if that is true?
I'd like to offer some words of support to parents and sufferers. Firstly they are lucky to have been diagnosed at such a young age, since it is only now that i have begun to piece together events of the past twenty years and understand why my eyes can't be improved by lenses, and why it has felt like my eyesight has deteriorated for no apparant reason. Secondly, before last week i have never been incapacitaed, (except where driving is concerned)I have led a normal life, doing normal things. And yet it is only now that i am confirmed as partially sighted. If i had not have gone to the hospital a month ago with a haemorrage, i probably would still be none-the-wiser.
I am determined that this is not going to stop me doing what i want to do.
You don't have to 'see' the world perfectly to be able to appreciate it
Re:retinoschisisPosted by stemc86 on 2/25/2005 at 10:56 AM
hi, im 18 years old living in the uk. i found out i had retinoschisis when i was very young. but it still didnt prepare me for not been able to drive a car, this is all i have ever really wanted to do. nearly every day i sit on the computer looking on many websites just looking for treatments and ways to make me have the vision i need just to pass my test. there is nothing.i feel better seeing this site knowing its not just me in this position. thanks. steven
Re:retinoschisisPosted by newellbowl on 4/27/2005 at 12:19 PM
can anyone tell me what kind of sports they let there kids play with retinoschisis. We let our two boys play flag football? What can anyone tell me about when the eye hemoriges. should we get our kids to a doctor and what things can we have them avoid so they dont.
Re:retinoschisisPosted by Mark on 5/19/2005 at 5:28 PM
Hi, I'm 21 and was diagnosed with retinoschisis at the age of 17 after I realised my sight wasn't good enough to drive. Not being able to drive has had a major affect on my life and I'm currently considering whether or not to go into the job I always wanted to go into (Civil engineering) as not being able to drive would mean not being able to go to site etc. This would be incredibly frustrating after having studied at university for 4 years.
I would strongly advise you to make your children aware of what they won’t be able to do in a modern world where it seems a car seems to be expected (and necessary) to get around, public transport is useless. Not being able to drive leaves you depending on others constantly or missing out on opportunities constantly. I’d advise anyone to tailor their life around this. For example I’ve always wanted to carry on living in the country, but I expect to move to the city where I’ll be able to utilise what ever public transport there is.
Re:retinoschisisPosted by VICTORIA on 9/5/2005 at 9:06 PM
My nephew was just diagnosed with retinoschisis... he's 5 years old... We are from Mexico and would like to know if there's any hospital or association we can go to in order to receive information and/or treatment. Also, I would like to know about hospitals and doctors in the US. Thanks!!
Re:retinoschisisPosted by smashiah on 4/9/2007 at 12:41 PM
Hi. my family and i just found out that our two boys ages 7 and 5 have retinoschisis. My 5 year old condition is a lot more advanced than my 7 year olds plus he has ambloyia (lazy eye in one eye) as well. He is currenly seeing 20/400 out of his bad eye and I wanted to find out if there were any suggestions on schooling that some parents or persons with this condition suggest. we are thinking of having the boys attend a special school for the blind here in Raleigh, NC but were trying to get feed back from other parents opinions or anyone who has gone through this and give us some advice.. PLEASE HELP.. we are really not sure about anything that we should be doing.
Re:retinoschisisPosted by jessy on 11/28/2007 at 10:55 PM
Two years ago my son was diagnosed with retinoschesis. When he was about 6 months old I notice one of his eyes getting bigger than the other, took him to a specialist and was rush into immeditate surgery with a detached lens in hisleft eye. ( which i have no idea if that was caused by the retinoschesis) now he wears a contact lens in that eye to substatute for the missing lens. We were working on the rehabilation of that eye by patching his good eye. Well let me say that its a lot harder than it sounds. My son hated it and being a stuborn as he is alot of the time he would fall asleep right after I would wrestle it on him. It became a constant battle with my two year old. Then at a regular visit his eye doctor saw some folds and veils on his retina's. Sure enough it was retinoschesis. I am a carrier and have another son also who as of now doesn't have the disease. Is there anyway to find out whether or not he carries the gene before he develops it? Also I just heard about some people having hemmorages from retinoschesis. Why and does it happen to all people with it or just some and what does it mean when it happens? Reading these responses really helped me see things a little differently. I thought it was my fault cause I couldn't keep that patch on his eye. He's almost five now and can still see pretty good up out of his right eye but his left one is barely hanging on. He still plays baseball, football, rides his bike, he even has his own four-wheeler and drives like he was born driving one. Best Wishes to all on your journey's
Re:retinoschisisPosted by stacie on 1/8/2008 at 3:55 PM
I have an 8 year old son who has retinoschesis. He was diagnosed when he was 5. I also have two sisters who also have sons with this condition. Recently I was told that there was a doctor in Michigan who was doing a lot fo cutting edge treatments for retinoschesis. Just wondering if anyone knows any more about this doctor.
Re:retinoschisisPosted by jandjbraasch on 2/22/2008 at 8:43 PM
I live in Michigan and our son was just diagnosed with x-linked retinoschisis. We go to Associated Retinal Consultants in Royal Oak (Detroit). His doctor is Dr. Kimberly Drenser. I don't know if this was the doctor you heard about, but they do a lot of research. I would love to discuss this more with you. We have a lot of questions because he was just diagnosed. Feel free to e-mail me.
Re:retinoschisisPosted by Heather Early on 3/3/2008 at 4:24 PM
For over two months we have been on a roller coaster waiting for the results of my son's genetic testing. I brought him in for a routine eye exam to find that he had a detached retina that had been detatched for sometime. He had his surgery and is doing good. We recived the results last week that he has retinoschisis (which my brother also has) I am not sure where to go from here. I am very confident in the doctor we have, but am having a hard time being patient. It will still be a few months before we can start therapy and get glasses for him. He has just turned 5 and will start kindergarten next year. If anyone has any advice on what I could be doing now to help him please respond.
Re:retinoschisisPosted by rubaba on 6/25/2008 at 5:17 AM
hi i am a mother of a 9 yr old son, who was diagnosed with Retinoschisis at the age of 2.he has bilateral retinoschisis of both eyes. his right eye vision measured 20/190, and left 20/94. the central vision of right eye is affected. the left eye 's schisis has stopped short of the macula, thus he is seeing with one eye now. he is in standard 4 and operates as a normal boy. i try to make him avoid contact sports, but he is very sporty and often runs and jumps around., which at times causes his vision to blur temporarily . I being a working lady, single mom can not put him under my direct vigilance all the time, but i have explained his situation to him and he has accommodated accordingly. i have put him in music class (piano) and he is doing very well. i have tried to divert his interest from sports to music. in the future, if he faces more vision loss, i believe he can still continue with playing music cause once you have mastered the art of playing an instrument, even if you loose your vision you can lay it. i take him to Singapore glenaggles hospital every 6-8 months for regular check up. latest report indicates unchanged appearance. he was patched for 3 yrs, 4-5 hr a day since he was 2 yr old but then doctors advised me not to try as he had already lost major vision of his right eye, thus patching wld not help. i taken my son to Moorefield hospital and doctors gave me same avice and informed their is no treatment. i am now planning to take my son to USA. but i have no clue where to take him. i have heard about kelogg research center at Michigan. can anyone pls help me and let me know which is the best institution, who is the best doctor that i can take my son to? i know there is no treatment , but i want him to be examined by the best possible doctors, so that i have not left any stone un turned. is there any good hospital and doctor for this disease in California?
Re:retinoschisisPosted by nattyg2 on 11/1/2008 at 3:36 AM
we have just been told that my 7yr son may have juvinile retinoschesis. this does run in family. iam absolutely distraught. i have read quite abit on it but im still not that sure registering him blind. on alot of websites its saying that they are legally blind. i do not want to do this for my son as i dont want this to finalise anything that hes future may hold.
Re:retinoschisisPosted by jcrewe142 on 10/9/2009 at 4:06 AM
I'm 18 and was diagnosed when i was 8 months with this condition. About a two years ago it all came to light when i went to get my boat license here in our sea side town. i found it incomprehensible that i was not able to drive a car or boat, especially when i go about every day tasks just as every one else. I love mountain biking and most other adrenalin sports, and compete competitively in all of them. I'm keeping my fingers crossed that one day a cure will be found or at least an improvement can be made to my current vision making me able to drive a car.
Re:retinoschisisPosted by apayne on 10/27/2009 at 12:32 PM
Hi, my name is Andrea, I live in Texas. I have 2 sons one of which has been diagnosed with x-linked retinoschisis, I also have a twin sister whose son has it also. My son is 10 and my nephew 8. My nephew was struggling in school last year and corrective lenses did not help. They originally thought he had Stargart's, after testing they diagnosed him with retinoschisis. Due to the family link they tested my sons as well, my 10 year old has worn glasses since he was 5, and they did help, only because he also has malfractions. I have done inernet research for over a year now on this. I was very excited when I ran across this article here is the web site and I have also copied and pasted the article below for yall to read. if yall find more on this or have qestions please e-mail me
Resolution of Retinoschisis after Vitreous Surgery in X-Linked Retinoschisis
Fumiko Ikeda, MD1, Tomohiro Iida, MD2, Shoji Kishi, MD1
Received 14 December 2006; received in revised form 25 May 2007; accepted 25 May 2007. published online 13 September 2007.
To describe the efficacy of vitreous surgery to treat X-linked retinoschisis.
Retrospective, comparative, interventional case series.
Three patients (5 eyes) had foveal retinoschisis with peripheral retinoschisis. The patients’ ages were 26, 7, and 17 years at the first surgery. The preoperative best-corrected visual acuity (BCVA) was 20/100 and 20/40 in patient 1, 20/30 in patient 2, and 20/100 and 20/200 in patient 3.
The vitreous surgery consisted of core vitrectomy, surgically induced posterior vitreous detachment (PVD), removal of the internal limiting membrane (except for the right eye of patient 1), and 30% sulfur hexafluoride gas tamponade. The follow-up periods ranged from 6 months to 12 years.
Main Outcome Measures
Best-corrected visual acuity and retinal tomography monitored by optical coherence tomography.
Restoration of the foveal depression with collapse of the schisis cavity was achieved with the first surgery in 4 (80%) of the 5 eyes. In the right eye of patient 1, the retinoschisis persisted after the first surgery because of failed surgically induced PVD; the retinoschisis resolved promptly after the second surgery with successful induction of PVD. The BCVA improved in 3 eyes and was unchanged in 2 eyes.
Vitreous surgery resulted in reattachment of the retinoschisis with visual improvement. Vitreous traction may play a role in the development of foveal retinoschisis.
Available online: September 14, 2007.
Re:retinoschisisPosted by esteban222 on 12/29/2009 at 3:07 AM
our 3 year son was diagnosed with retinoschisis a year ago and has had multiple surgeries due to the disease. he has had retinal detachments, angiograms, and a silicone oil implant. as of a few months ago, he using started azopt. we are seeing a pediatric retinal specialist in los angeles. he wears sport goggles made by recspecs. one side is a clear lense to protect his good eye and the other side is a rx lens. he has been wearing these glasses for about 8 months. at first he hated them, but now he wears them without any fuss. everyone loves his glasses. they come in a variety of colors. as part of his ongoing therapy, we cover this good eye with a patch for 2-3 hours a day. the doctor indicated this would make his weak eye get stronger. he has been doing this for over a year.
Re:retinoschisisPosted by esteban222 on 12/29/2009 at 3:12 AM
if you are still out there, you can contact me at
Re:retinoschisisPosted by wacky on 3/26/2010 at 7:19 AM
Hi Andy do you have an e-mail address, would like to ask you for personal advice due to your experiences !. Thnx.
I wish the best to all of you with this condition as my son too has it.
It's a mircle God has answeredPosted by Joemalone56 on 11/16/2010 at 8:10 PM
Hi my name is Joseph Malone and I am 26 years old. I have been living with retinoschisis my entire life. My mom passed it to me when I was born. It was tough growing up but, I always kept my head up and kept praying. My Uncle is a eye doctor in Nashville TN and he heard of some research that was going on for people like me with the disease. They are using drops that Glacoma patients are using. So he started using them on me three months ago guys I went from seeing 20\150 to seeing 20\80 and seeing 20\70 in both eyes I just went and found out yesterday this news I am so happy God has answered my prayers. I want to let everybody know about it that has my disease I have never met anybody with the same disease other than people in my family. My uncle is about to start bringing in the rest of the males in the family to try it . So u see I was the Ginnie pig but it worked. I know this is probably hard to believe but I am telling the truth please contact me my email is firstname.lastname@example.org. The drops are called Azopt. I was trying to do more research on the internet and seen this site and read the stories and I want to help you guys please contact me.
Re:retinoschisisPosted by Scott C. on 3/3/2012 at 9:04 PM
Hi to everyone. I am a 43 year old male living with RS. I am married and have a son. I work full time in a mill as a machine operator. I drive a car (only in areas which i am familiar with) My wife does most of the driving. My vision is 20/70 and 20/60. It is relatively difficult to maintain and keep my DL but I know my limitations and work closely with my eye doctor. I was diagnosed with RS at a very young age. My Grandpa had RS and my mom passed it a long to me . I have 2 older brothers. The oldest doesn't have it at all, my other brother has RS but not as sever as i have it. I have always been self conscious of my vision but it hasn't really limited me in my daily life per say. When i was little the doctor said i would probably not be able to ride a bike and definitively not drive. Luckily for me my parents never limited me or considered it a handicap or disability. As a teenager i raced BMX bikes and was really good at it. I also downhill ski and am a really good skier. While driving is a bit of a task, I do, but like i said you have to know your own limitations.
I went to a regular school just like everyone else. I was at that time offered books on tape and large print books from the Government but never used them out of my self pride i guess. To this day i am still self conscious. People do not seem to understand that my vision can not be corrected with glasses also I have a lazy eye due to the difference in visual acuity from my right eye to the left. I had surgery to correct this when i was about 7 or 8. But come to find out it wasn't because of the muscles but due to the difference in visual acuity from one eye to the other, so that was all for nothing. I have had some hemorrhages in my eyes when i was younger but my vision has been extremely stable throughout the years. I have tried those drops for glaucoma but all they did was give me a headache. My advice to the moms out there is not to blame yourself and don't limit your child and don't be too over protective. Let him be who they will be and be very supportive.
Re: retinoschisisPosted by stapen7 on 1/10/2013 at 4:58 PM
I am a mother of 2 boys, ages 4 and 7. Both were diagnosed with RS about 2 years ago. I have a grandfather that had it and 2 cousins. My little one's vision is very bad- he is legally blind. My 7 year old isn't as bad at this point. We treat them both like normal kids. I want them to do everything boys do and to know that they can do anything. It just worries me because I want them to have a normal life just like any mother wants for their children.
Re: retinoschisisPosted by snoel on 6/2/2013 at 12:27 AM
Our 3 year old son was just diagnosed with juvenile X linked RS this past month. We also have many questions about how this will affect his life. We are very confident in the doctors we are seeing. We are in Utah and are seeing Dr. Hoffman and Dr. Hartnett at the Moran Eye Center. We also realize there is still a lot to learn about this disease. We are awaiting some genetic test results since there are signs of this in his male cousins, both older and younger. These responses have been very helpful and encouraging. Thank you. Feel free to email me if you want to just have someone who understands the diagnosis or if you have anything to share.
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