Skip to Content

AFBAmerican Foundation®
for the Blind

Expanding possibilities for people with vision loss

juvenile retinoschisis

I have two boys ages 10,12 they both want to play flag football is there other parents that have let there kids play sports and if so which ones. Has anyone experienced a hemorage of the eye and what did you do. Is there a foundation for J retino schisis. have there been any breaktroughs on the disease. What kind of things are good to know from some of you parents that have raised kids with this disease.

There are currently 4 replies

Sort Replies Oldest to Newest


Re: juvenile retinoschisis



Hi all,
I reside in the UK and my child (12yrs) has been having half-yearly check-ups to monitor his condition 'Retinoschisis' for the past 4years, which until yesterday has been deemed 'stable'.

Following yesterday's examination it has now been confirmed that more 'schisis' have been identified and now I am quite concerned (as to is the consultant). The consultant is reluctant to intervene with treament at this stage opting instead to change the frequency of examinations to 4 monthly, whilst hoping that the condition stabilises!

The only treatment that has been mentioned is to inject oil into the eye in an attempt to stabilise the condition but apparently it brings its own set of issues and concerns.

Whilst searching the web for further infomation and waiting for the Royal National Institute of Blind People (UK) to return my call, I came across this website and its posts and thought I'd submit this post and ask the following question(s)...

Q1. What other types of treatment are available in the USA (UK and/or Worldwide) that you're aware of?
Q2. Which of those treatments are deemed to be the best option (or are treatments age and/or stage of condition specific)?

Thanks in advance for your feedback and direction
David


Re: juvenile retinoschisis



I have an 11 yr. old son with JXLR. His first doctor told us he should not play sports, but his second doctor told us that we should not hold him back from doing the things he loves because of what COULD happen. The same things could happen playing at recess or in the back yard. What kind of life is it, if you never do anything you love.

On another note, we found a doctor in Houston, TX who had two young patients 20 yrs ago with this disease. He performed surgery (vitrectomy & membrane peel) on them back then and they are doing well today. He suggested this surgery for my son, since he is losing his central vision. It seems to be working and the schisis cavities are collapsing. We will just have to wait and see.


Re:juvenile retinoschisis



My parents never let me play "regular" sports. :^(. They always had me sit on the sidelines and listen or be the scorekeeper which was really, really, really boring. Let your kids play sports! Trust me, it's worth it. I missed out. Don't make the same mistake my parents made.

Annie


Re:juvenile retinoschisis



You might find the following parent groups helpful:
National Association for Parents of Children with Visual Impairments (NAPVI)
• Membership Organization - Consumer
• National Organization
P.O. Box 317
Watertown, MA 02471
http://www.napvi.org
napvi@perkins.org

Phone #1: (617) 972-7441 (Local)
Phone #2: (617) 972-7444 (Fax)
Phone #3: (800) 562-6265 (Toll-Free)
and
National Federation of the Blind (NFB)
National Organization for the Parents of Blind Children
1800 Johnson Street
Baltimore, MD 21230-4998
http://www.nfb.org
nfb@nfb.org

Phone : (410) 659-9314 (Local)
Phone #2: (410) 685-5653 (Fax)

There is a website that links you to some sources of information/research on Juvenile retinoschisie
http://www.tourbus.com/Juvenile,-X-Linked-Retinosc...

Hope this helps


Log in to Post a Reply