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for the Blind

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Aniridia

My 10 week old son has just been diagnosed with aniridia. Are there any parents out there who can answer some questions on the condition and living with the condition?

Thanks
Vic

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Re: Aniridia



Hello!
I am in my fifties and I was born with Aniridia. I am glad there have been some resources for you.
I can only offer my experience with this eye condition.
Okay, so I only have just a fragment of color in each eye to at least let me know my eyes are brown.
A doctor who got in touch with me in my mid thirties to talk to patients with Aniridia at Children's hospital in Los Angeles.
He told me that aniridia was passed down by the father's side of the family. This was a while ago. He said something about the malformation or underdevellopement of the 11th chromosome.
It was explained to me that five percent of people have this condition.
Due to aniridia, my pupils are permanently dialated.
Which means I am extremely sensitive to light.
Sun, office lights, car lights at night passing me by.
I wear specially made sunshields when going out in the sun.
I have tinted corrective glasses to keep the inside glare in check.
Another issue I have with the Aniridia is depth perception.
I have trouble seeing curbs. Curbs and streets blend.
Cloudy days are filled with glare. Sky, sidewalk, and streets blend together with white and gray. Called a white out day.
For me, I use a cane in places I am not familiar with.
I am afraid I will trip over a crack on the sidewalk or miss a curb.
My being legally blind has to do with my nystagmus, but I use magnifiers and at times use a cctv.
When I go to the eye doctor; I do not need my eyes dialated.
I lead a very normal life. I have a job and I went to college and got my degree.
My eyes may look totally black, but my eyes don't define who I am. No one has questioned me about that.
I am dealing with some cornea issues due to years and years of Aniridia, but I have a lot of confidence in my eye care professional. Everything is stable right now.
I know some friends with Aniridia and they are around my age.
Everything with them is just fine.
I do not have resources ,but I have lived with it.
Best Wishes
Lorianne


Re: Aniridia



Are you saying that USAAN was for profit back in 2002? if so that is incomprehensible. Oddly enough we have tried to contact USAAN several times to become members and they seem to "magically" forget to reply. It is sad that an organization which claims to want to help people doesn't really try. I suspect that is because CFAR wrote several guides and teachers aids and USAAN is probably selling them for their own profit. While we really don't mind it is sad. Just to update, Kat (our daughter) will be 18 soon has a boyfriend (he is a cadet in the reserves) is at college, in Liberal Arts, on the Deans List and has a great love for art, writing, poetry and the classics (Roman & Greek literature) so as we have said in the past, don't let anything stop your kid, support him/her and just be there for them

we can be reached at:
the.gangs@videotron.ca

regards


Re: Aniridia



Hi everyone...Aniridia Foundation International is a nonprofit organization that you may like to get involved with. We provide information / education, we hold medical, scientific and social conferences for those with aniridia and their families, we have great resources for research with collaborations with several medical and research universities worldwide, and have an active group of families with aniridia. If you would like to become involved, email info@aniridia.NET. We'd love to have you be a part of the team working towards a cure, better treatments, and assisting those living with aniridia syndrome.

Just to correct a previous post...USAAN was mentioned above a couple times along with words "and others" however, the post obviously had confused USAAN with the American based group the International WAGR Syndrome Association as USAAN was not even a nonprofit when CFAR closed, however, IWSA was.


Re:Aniridia



Hello! Is anybody still checking this thread? I'm interested in connecting with other parents with kids with Aniridia and just emailed some of you who posted their addresses. My son is 8 months old now and we're especially struggling with his light sensitivity. What do you all do to protect your little ones' eyes from the sun? Has anybody found sunglasses or hats they especially like? Thanks so much!


Re:Aniridia



For those who may want a little encouragement, our daughter is now 15 (soon to be 16) and will be graduating high school. Born with Aniridia, underwent 14 surgeries, lost vision in the left eye and has 20/70 in the right eye (corrected). She has been on the honour roll througout high school at one of our city's most prestigeous private schools. She has climbed Mt. Vesuvius in Naples, Skied (un accompanied), Is a terrific writer and a great Star Trek fan. She will be going to colleg next year and spent a day at the school she will be attending. The staff there all said she was amazing and they all look forward to her being there next year. In March she will be going to Peru to help build a school with specific kids in her graduating class as part of the Duke of Edinburgh Gold Level. To all those parents who have so many fears, dont let them get to you, keep pushing with the schools, the Dr.s, the world and you will see (pardon the pun) that your childeren will surely outshine, outrun and out perform any limitations that anyone will try to put on them.


Re:Aniridia



Hi my name is Sheila and my 23 year old son has aniridia. Having raised a son with aniridia, I may be able to answer some questions for parents with younger children. Feel free to e-mail me at mwpeter6786@yahoo.com. Just as a bit of encouragement....my son has 20/200 vision and is currently near the top of his class in gunsmithing school!! Where there is determination, there is the possibility for all your child's dreams to be reached.
Sheila


Re:Aniridia



Hi there,
is this thread still active? I have a three-month-old who was born with Aniridia and would like to connect with other parents who have kids with the same condition. Thanks!
Karin


Re:Aniridia



There a ton of magnification devices including for your computer and more. CCTV or video magnifier are devices that sit on a desk, but their are also more portable versions. But, this means decreasing the size of the screen and ease of reading.

There are a ton of options out there.

No problem and I wish you luck!

Sincerely,
Joe S.
AFB Staff


Re:Aniridia



Thank you very much for your professional advice and quick response to me. I had also consulted some opthamologists here in Hong Kong and would prefer to use the low vision devices to improve my son's reading capability. Indeed, you can hardly tell he is vision impaired because he just behave like normal kid, he can read more than 50 flash cards and pick up tiny things on the floor though the contrast is not so obvious. I am just worrying that, it will be difficult for him to use "brallie" as he can use his eyes to read smoothly, ( of course not for "font 12" size), I think he would prefer to read through his eyes. thank you so much for your information and let me share my feeling through your network, especially I can't find any network here in HongKong.
Thanks again!!


Re:Aniridia



Professionally, it is difficult to say whether braille is the appropriate medium from the information provided and not completing a Learning Media Assessment (LMA). I would say 6/75 means what he sees at 6 feet, most people can see at 75 feet (also depends on what type of measurement).
Braille can be a great option, but it is not the option for every person. I personally am a big believer in braille for younger students.

Persons with visual impairments including Aniridia do sometimes develop other eye issues such as cataracts or glaucoma -- but this is not an always thing. Some eye conditions have a larger chance of developing these other issues.

Braille is never a horrible option, it allows another medium. Is your child using low vision technology, such as magnifiers? There are hand held, stand, electronic, and more types of these devices.

I don't think we can tell you what the best option. I would seek out professionals in your country that could evaluate or at least introduce you to what is available. If you are not happy or unsure, you can always seek another opinion.

Check out www.familyconnect.org -- connect with other parents.
Check out www.hadley.edu -- they have resources in China too! Online schooling for persons who are visually impaired and for parents and professionals.

I am sorry if this is not a lot of help.

Sincerely,
Joe S.
AFB Staff


Re:Aniridia



I am a Chinese, living in Hong Kong and my 2-yr old son was aniridia with vision, 6/75. That's mean he is classified as "serious low vision" kid. Opathmologist in Hong Kong suggested him to learn Braille, I am wondering whether I should let him learn Braille, giving he can read many many "flash Card' and know many word by using his vison. Very limited information about Aniridia in Hong Kong. May I know, are all anaridia come across "glaucoma" and "cataract"?


Re:Aniridia



people with aniridia can develop Wilms tumour (a tumour of the kidneys), and glaucoma. at the age of 9 i develop glaucoma i had glaucoma surgery and go every 6 months from then on. i was checked by Ultrasound every year for Wilms tumour that was ruled out of developing in me in 1999 from genetic testing Ultrasounds were not necessary anymore it truned out ill never get that.


Re:Aniridia



My son has just been diagnosed with aniridia . I live in Los angeles , california.. If anyone can email me and tell me what else can happen or what can i do for i would be very thankful..
sincerely:Carla


Re:Aniridia



hi i´m rebecca and i have sporadic aniridia and i have urinity problems and i have answers and questions for mothers who don´t know how to help and i hope anyone will answer me i have never met anyone who has the same problem and it amazes me and for people who have aniridia can get lonely and depressed and annoyed for people say they understand but they don´t they want to help but we want someone who understands our feelings against aniridia but we just love and understanding which is hard to find if anyone has anything to say ask me


Re:Aniridia



Hi, my mum and my sister have aniridia. Does anyone know what the chances are that I'll pass it on to my children?

Do you think it's work visiting the drs to chat about it?


Re:Aniridia



Hi My son was born with anaridia and from what i understand from what the dR's have told me is that the iris of the eye is just a stump. in other words it has never fully developed into a full iris. Therefore bright lights sometimes hur their eyes, they tend to see better in dimmly light rooms. When they do look at a light it's like coming out of a dark movie theather after the movie is done, into the bright light out doors.
When my son was an infant I would put on baseball caps and sunglasses on him. I have aske the dr's about transisitional glasses, but the want him to see all the light he can. Also reg prescription glasses do offer some uv protection.
Hope it helps.


Re:Aniridia



I am a 23 yr old mother of a beautiful baby boy named CJ. he is going to be three this year in july. He was born with the eye disease SPORADIC ANIRIDIA . we live in Norman oklahoma and his eye specialist is awesome and his genetics doctor is too. if you need help or need to talk just email me at cflwrchld101@aol.com

he is so bright , i dont hold him back just because of his imparement and i hope that anyone with any child with this desease gets to let their child be a child , dont be afraid to pray , and let your children be children.


Re:Aniridia



I DONT CHECK e-mail every day so it may take several days to respond, but i will do my best. God Bless. Joel


Re:Aniridia



My 5 year old son has SPORADIC Aniridia. I have learned and experienced how difficult it is for a parent to learn about this eye condition, let alone find a doctor with experience in dealing with it.
Please feel free to drop me a line with questions about my son and his/our experience with SPORADIC aniridia.

We live in the Baltimore Maryland area. My e-mail address is Joelbalti@comcast.net

I DONT CHECK


Re:Aniridia



First let us explain who we are. We are the founders of the original CFAR (Canadian Foundation for Aniridia Research) we were parents of a newborn baby girl who was born with sporadic Aniridia in 1995. Our organization was the first and we originally had the web site for aniridia.org

Unfortunately USAAN and others sprung up because some of our amercian members weren't completely satisfied with the fact that we didnt address other parts of WAGR syndrom. Considering that our mission was to raise awareness of Aniridia, we choose to let them (those members) go their separate way.

To be honest seeing how well we raised public awareness (in that USAAN and others were able to use us as a launch pad) we feel that this means that our mission was a success.

If you would like, please feel free to ask us any questions, we have wound down the foundation to devote all our time to our daughter and helping her achieve all she can in spite of her condition.

We can be reached at :

the.gangs@videotron.ca

By the way, our daughter is starting Grade 7 (middle school) in a main-stream private school and was awarded a partial scholarship for academic achievements so don't let the world get you down. With a little luck, help and perserverance you will pass through this as well.


Re:Aniridia



I meant "month ago", sorry.


Re:Aniridia



Hello!

I would like to ask if this site is still active since the last posts have been made years ago. If not, could you please tell me where to go. Also, aniridia.org seems not to be updated, but I might be wrong.

Thank you for your help.

Attila
attila.arpa@gmail.com


Re:Aniridia



hi I am 24 born in 83, live just outside of the best place for eye care Boston Massachusetts. I was born with aniridia an have Nystagmus. I developed glaucoma when I was 9 been to the worlds best glaucoma doctor David S. Walton. I had 3 surgery done to release the pressures in both eyes and once for one eye got flat. From birth to 1999 I went in every year for ultrasounds for willms tumor for those with aniridia are subject to develop that. I went in for genetic testing and they said I wouldn't ever get it for I didn't have the Gen. So I no longer had to have yearly ultrasounds for willms,. today bi see Dr Cynthia Mattox at New England Eye Center at St. Elizabeth's Medical Center every 6 months at this point my statue is stable.

story

over years ago and still to today I became friends with a kid that movie into my area that had aniridia he haves worst off vision them me but I got glaucoma he didn't develop it. we met in a after school program and I didn't know that he had it till the teacher interdicted us said so and I never met anyone else that had this. We became friends and for us to be friends and live same town with same eye problem what are the odds people wow always about that when we tell people this,

.


Re:Aniridia



I too have a new born that has been DX with aniridia and glaucoma and hazed corneas. thank you for posting online. Im trying to find solar glasses for my new born have you had any luck?


Re:Aniridia



You should look into becoming a member of the USAAN (www.aniridia.net) and/or the Aniridia Network group (www.aniridia.org). I have found them both to be excellent groups to chat with about anything that concerns you. My 20month old son has sporadic aniridia. Please feel free to contact me if you have any questions.


Re:Aniridia



My 13 yr old also ha Aniridia. As she has gotten older I let her lead. If her eyes are bothering her with the light and accomodate as needed. I always make sure to write all over her forms from school and elsewhere she has it just so if ever emergency care would be needed the medical care individual would understand about the Iris not constricting. You never know it could life or death. I also insist on her IEP's the list use of sunglasses and or hats if she needs.


Re:Aniridia



You might want to try contacting
National Association for Parents of Children with Visual Impairments
(800) 562-6265
http://www.napvi.org
napvi@perkins.org

and the National Organization for Parents of Blind Children, National Federation of the Blind
(410) 659-9314
http://www.nfb.org
nfb@nfb.org

I think you will find these parent groups helpful generally, but they may have members who have a child with the same condition and who can answer questions about it.

If you would ike other referrals or information, contact the American Foundation for the Blind at afbinfo@afb.net.


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