Optic Nerve Hypoplasia Support Group

My name is Heather and I am 20 years old and I have OPH.If you have any questions just send me a message and I will be glad to answer them!!

Hey everyone I just signed up heretoday because my 6 month old daughter was diagnosed with onh ther day before yesterday..I'm hoping to find out as much info as I can so I know what to expect..right now we are trying to strengthen her left eye because it has home crossed..her right nerve is close to normal..but the left is abnormal..we haven't yet gotten the hormone results..and we won't know how much she actually sees until october when she will be put to sleep for the vision test..we are hopeful and praying for the best..if anyone has any advice or helpful comments please contact me I need all the help I can get!

I was born with Optic Nerve Hypoplasia. I would be more than happy to help you out as much as I can. I know a lot about the condition and I have had several surgeries due to the condition. I get on here quiet often so please feel free to send me a message or if you would like i can send you my email. If i can do anything to help you please let me know. God bless you and your family.

Hi I'm amanda im 20 and my son jesse was diagnosed with ONH with NO light perception at 11 mounths old and was diagnosed with congenital panhypopituitarism a growth hormon deficiency at age 3
Your not alone. :)

my daughter, Kassidy 14 was diagnosed with ONH and hypo pituitarism as well. did the growth hormone thing, done now. She hated it. She is almost 5 ft 1 inch. She is 14, looks like 10....has always had trouble making friends. Kids can be mean. The few friends she does have are much younger. She is so sweet and caring, it breaks my heart to watch her struggle.