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Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

Last post 06-11-2009 5:41 PM by HayleysMum. 9 replies.
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  • 06-03-2009 8:44 PM

    • HayleysMum
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    • Australia
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    Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    Hi Guys

    My name is Lisa and I am new to this site so sorry if it has already been asked - I have done abit of searching on here already and picked up alot of ideas, like the black paper with hole in the middle, going to try that tonight.

    We are in Australia and there is not much happening over here, my daughter Hayley, is now 7yrs old and in her 3rd year of school.  She is a OCA1A with red eyes and is legally blind so light is a major factor for us.  I have just recently thought about colour contacts and read a few articles on here and think I will look into it further now.  As she has the red eyes would brown be the best colour to try with her?  I have made an appointment to see the Orthoptist but couldnt get in till mid Sept which is a pain as I want to progress now!  She is just starting to struggle at school now, she does have a CCTV, magn and the other things to help but the light is such a major problem.

    Does anyone know if anything is happening with stem cell research into getting pigment back into their eyes yet or anything else to help them?

    I have also emailed Moorfields Eye Hospital yesterday to see if they are doing anything at the moment but still waiting on an answer, the problem is we are just sooooo far away from it all in Australia.

    Would love to hear any suggestions of advice from you guys.

    Thanks again Lisa (mum)

     

     

     

     

     

    • Post Points: 80
  • 06-03-2009 9:52 PM In reply to

    • bojon91
    • Top 25 Contributor
    • Joined on 07-16-2005
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    Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    As far as everything I have read, all that stem cell research is still in the theory/animal testing phase, human testing is still at least a few years away. Tinted glasses with anti-glare coating, and a hat with a brim, even inside school, should help her. Have you contacted the Albinism Fellowship of Australia? They should be able to give you much more local info and chances for meeting in person, it is important for our kids to know they are not the only one, though you are more than welcome to stay on here as well.
    • Post Points: 5
  • 06-05-2009 12:04 AM In reply to

    • courtney2
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    • Joined on 06-07-2006
    • milton, PA
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    Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    My doctor actually said that some of the most promising research for pigment "replacement" is related to cataract treatment.  Don't know if this is true, and I highly doubt it is anywhere near the point where it is being tested, but just thought I would mention it.

    Courtney

    • Post Points: 20
  • 06-05-2009 12:33 AM In reply to

    • HayleysMum
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    • Joined on 06-02-2009
    • Australia
    • Posts 4
    • Points 110

    Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    Thanks Courtney for that it seems things are still a distance away yet but I have discussed coloured contacts with Hayley and she is excited to give them a try so will persue that in the meantime.

    thanks guys

    • Post Points: 20
  • 06-05-2009 1:48 PM In reply to

    • Una
    • Top 50 Contributor
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    • UK
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    Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    My kids are under the care of Moorfields Eye Hospital in London and they tend to classify albinism as a stable eye condition and have not mentioned any treatments other than the usual. My son has coloured contacts since he was 14 and my daughter has tinted glasses but will go into coloured contacts once she can tolerate putting them in, we have been unsuccesful up to now!

     

    • Post Points: 5
  • 06-07-2009 9:31 AM In reply to

    Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    Lisa,

    It's not possible the your daughter has just Ocular Albinsim because 80% cases of Ocluar Albinism which the gene is on the X Chromsome which means it's X-linked which also means the a female is a carrier anc can only have a son with Ocular Albinism. Chances are your daughter most likely has a type OCA which is also a type of Albinism that affect the skin hair and eyes to a varying degree. Also a Stem Cell treatment won't be able to correct all the problems that are involved with Albinism because most of the problems that are exsistance with Albinism are the ways that the eyes are routed to the brain. I also don't believe stem cell treatment would work because in the worse type of Albinism with is OCA1A these folks don't make any meianin pigment. Hence the term Hypopigmentation. And, even people with OCA1A will either have Blue or Grey eyes. Red or Violet eyes in people with Albinism happens in certain light situation. Such as if you take her picture you would notice the her eyes will show up Red or Violet. Has your daughter had a low vision evaluation done?  Contacts I can't help you there. Are you guys members of the Albinism Fellowship of Austraila? Here is the link for the fellowship's website. http://www.albinismaustralia.org You may also need to educate her teachers about the condition.

    • Post Points: 5
  • 06-07-2009 8:05 PM In reply to

    Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    I always hear about 3rd grade it starts to get tough on the kids, script gets smaller. Have you tried having her sit up front away from the window. Have you considered doing braille with her?? We thought that was out of the question, but the more we learn about it the more we think it will have our son when he gets older. He will have duel media. both print and braille. He is doing prebraille now. It is just something to think about...also a very touchy subject with the albinism community as well. The older generation seems to be dead set against it, but the younger ones seem to be opening their eyes to it. Oh I forgot, what about the lighting in the classroom, I know some classrooms change the lighting to help. Also what about a slant board. I am trying to remember  things I have read in the past, Hope this helps!

    • Post Points: 20
  • 06-07-2009 8:50 PM In reply to

    • HayleysMum
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    • Joined on 06-02-2009
    • Australia
    • Posts 4
    • Points 110

    Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    Hi Guys

    Jessica that was very interesting about what you said on the stem cells.  We finally heard from Moorfields Hosp and after seeing photos of Hayley they told us they couldnt do anything to help her and that no further research was being done for them, so that was very sad news for us, plus everyone else!

    Hayley is a OCA1A, she has permanent transparence eyes all the time, so always red eyes, her body doesnt product melanine at all.  We are lucky though as both her eyes are fairly straight but does tilt her head to see things better and her eyes have been tested and she is classed as legally blind at 6/60.  

    After hearing all the bad news we are hoping that she can wear the coloured contacts as they should help block out some of the glare for her and maybe improve things abit.  We have a great support in the class room for her, she sits near the front, has a CCTV, the room is darkened as much as they can and got her back to the light.  I also bought her a sun viser that she wears it class as that helps with the above lights as she doesnt like wearing her glasses in class, so this is were the contacts will be great.  All her class work gets enlarged for her and we also have a CCTV at home for her.  We considered braille for her but with the technology at the moment we have decided to leave it and try and teach her ears to work better and get her listening to tapes and stories that way etc.  We dont have an appointment to see the eye specialist till mid September regarding the contacts so we just have to wait.

    I heard of a guy that grow frogs eyes a couple of years ago?? Anyway heard of his progress?

    Plus I heard of someone that injected stem cells into the eye nerve system that is connected to the brain and it corrected itself?!?  Has anyone heard of that progress?

    Thanks for all the advise it has all been taken on board, yes I have now checked out the Aus fellowship forum. 

    • Post Points: 5
  • 06-11-2009 11:10 AM In reply to

    Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

     Lisa and all,

    There has been a lot of talk about Stem Cell Transplants recently. A lot of parents from the United States and around the world taking their their children whom are totally blind or Visually Impaired or have other disabilities for Stem Cell transplants. Keep in mind these doctors in China think it's going to make a differennce in what the child can see if anything. Where Eye Doctors here in the United States especially don't think these children will notice much of a difference in what they can see. Also, they are using adult stem cells which is why the doctors here in the US didn't think it willl work because as is said in the medical community here is the US at times is that Children aren't just minture versions of adults. 

    Also here is a website of a family that lives in Adelaide, South Austrilia, with their daughter Alana who has OCA1A. 

    http://home.iprimus.com.au/jinta/alanas/index.htm
    • Post Points: 20
  • 06-11-2009 5:41 PM In reply to

    • HayleysMum
    • Not Ranked
    • Joined on 06-02-2009
    • Australia
    • Posts 4
    • Points 110

    Re: Ausie Daughter 7yrs OCA1A Advice on any new Tech-Stem Cells/Contacts etc-Australia too Small

    Hi Jessica

    No I dont think I will be rushing Hayley to China just yet but when it is done in US or UK will be very interested in seeing the results.  Someone needs to do something with the optic nerve correction then we will be on a good track and then the coloured contacts to block out the light.

    I had a look at Alana's site it is very good and she is gorgeous, she is lucky to have abit of colour in her eyes whereas Hayley is totally transparent all the time.  I have tried to load photos on here but it wont let me.

    • Post Points: 5
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