Optic Nerve Drusen

[lizzy1985]

My eye doctor just told me that  I have Optic Nerve Drusen. Are you born with this or its it develope over time?
Lizzy

[berrywoo]

She does need to be prepared for eventual sight loss. There are many support groups that can be found. Contact your local services for the blind or get in touch with the nearest chapter of the NFB (national federation of the blin). Also, if you're referring to the Moran Center in Utah, I'm sure they have excellent specialists in low vision to help her.

Both you and your daughter need to understand that blindness is not a curse or something to be afraid of. It is still possible to live a full live with a meaningful career and family too. The sooner everyone realizes this the better off the world would be. That is the NFB's position on blindness (and mine too)

Yes, she'll have to adapt to doing things a bit differently, but nothing is impossible. She can still go to the movies (many theaters have headsets that describe what's happening on screen), access the internet (via a screen reader), and read (with Braille or CCTV). There is public transportation in many cities for those who are disabled.  Daily living activites: cooking, cleaning, etc. are all still possible.

Losing your sight can be a difficult adjustment, but the sooner you begin to make the adjustments the better your quality of life will be. Don't go stumbling around in the dark when there are resources and poeple available to help.

If your daughter truly wants to live independently than she needs to take the initiative to get help: learn proper O&M techniques, Braille, screen reading software, etc. She can accomplish anything and everything she wants (ok, I'll admit she probably can't drive, but that's it)!

[John C Hagan III, MD, FACS, FAAO]

Optic nerve drusen rarely leads to COMPLETE blindness. The worse case I have seen in my practice can no longer drive, uses a reading machine but gets around nicely without cane, dog or assistance.

JCH MD

[Bird6]

    thank You for taking the time to respond to me. I will pass this info on

[John C Hagan III, MD, FACS, FAAO]

-

[maljb]

I am a 35 year old man, and my mother has had drusens diagnosed since I was a young boy. Although drusens makes her life difficult she has raised twin sons, leads an active and full life, is able to go skiing etc. My mums strength is admirable and I believe that it is her positive attitude towards life that keeps her healthy. I would advise anyone with drusens to take their meds and to lead as full a life as possible. Of course I worry about mum all the time but with loving family support and a healthy attitude, life is looking good for all the family. Mum has had this for over 30 years and it has made her an amazing person with a good heart and has given me full appreciation of the visual delights we take for granted in the world. Mum does not let drusens hold her back.

Mal

[John C Hagan III, MD, FACS, FAAO]

I would reiterate that in a long and very large practice I only have one patient where OPTIC NERVE (not macular drusen) DRUSEN have caused major visual imparement.

JCH MD