Optic nerve atrophy
in Health ·
I’m asking anyone here dealing with an Optic Nerve Hypoplasia (ONH) diagnosis to jump into this thread and share what you've been through.
DEFINITION
Optic Nerve Hypoplasia (ONH) happens when the optic nerve doesn't fully develop during pregnancy. It's essentially a glitch in the natural process where the nerve fiber background forms while the baby is still in the womb. While it can occasionally show up in just one eye (unilateral), it's much more common for it to affect both eyes (bilateral). Just to be clear: ONH isn't progressive, it isn't hereditary, and there is no cure. It stands as one of the top three causes of visual impairment in children in the US.
CAUSES
In most cases, we have no idea why ONH happens. It’s rarely linked to things like maternal diabetes, alcohol use during pregnancy, certain anti-seizure medications, or the mother being under 20 at the time of birth—but those are outliers compared to the vast majority of cases. From what we know, ONH hits every race and socioeconomic group equally.
CHARACTERISTICS
- ONH can occur on its own, or it might come paired with neurological or hormonal issues. Those hormonal problems might stay hidden during childhood only to pop up later in life.
- Vision varies wildly in kids with ONH; some have near-normal acuity, while others have no light perception at all. Field loss can range from a general lack of detail in both central and peripheral vision to a subtle loss of peripheral sight.
- A high percentage of kids with ONH also deal with nystagmus—those involuntary, rhythmic eye movements. Usually, nystagmus is tied to significantly reduced vision in both eyes.
- ONH is a stable condition. Vision won't get worse over time. In fact, you might see slight improvements in vision as the brain matures, or sometimes the nystagmus might even settle down.
- If vision loss is significant, depth perception can be heavily impacted.
- Some people may also experience mild light sensitivity (photophobia).
DEFINITION
Optic Nerve Hypoplasia (ONH) happens when the optic nerve doesn't fully develop during pregnancy. It's essentially a glitch in the natural process where the nerve fiber background forms while the baby is still in the womb. While it can occasionally show up in just one eye (unilateral), it's much more common for it to affect both eyes (bilateral). Just to be clear: ONH isn't progressive, it isn't hereditary, and there is no cure. It stands as one of the top three causes of visual impairment in children in the US.
CAUSES
In most cases, we have no idea why ONH happens. It’s rarely linked to things like maternal diabetes, alcohol use during pregnancy, certain anti-seizure medications, or the mother being under 20 at the time of birth—but those are outliers compared to the vast majority of cases. From what we know, ONH hits every race and socioeconomic group equally.
CHARACTERISTICS
- ONH can occur on its own, or it might come paired with neurological or hormonal issues. Those hormonal problems might stay hidden during childhood only to pop up later in life.
- Vision varies wildly in kids with ONH; some have near-normal acuity, while others have no light perception at all. Field loss can range from a general lack of detail in both central and peripheral vision to a subtle loss of peripheral sight.
- A high percentage of kids with ONH also deal with nystagmus—those involuntary, rhythmic eye movements. Usually, nystagmus is tied to significantly reduced vision in both eyes.
- ONH is a stable condition. Vision won't get worse over time. In fact, you might see slight improvements in vision as the brain matures, or sometimes the nystagmus might even settle down.
- If vision loss is significant, depth perception can be heavily impacted.
- Some people may also experience mild light sensitivity (photophobia).