Just googled eye condition now petrified

[MarCellon]

I know, I know NEVER google. At first it was ok, mainly don’t worry, some loss of periphery vision but minor, you won’t notice, complications rare to case studies about people developing tunnel vision and more worrying, Stanford have devoted a whole eye centre to the condition as it is “a significant cause of vision loss” with a case study on some poor chap who is missing vision in the centre of his eye.

The worst thing is it’s my son that’s been diagnosed not me. Have not slept, can’t work, feel sick to my stomach. There is no treatment so no hope.

Read some threads on here from posters saying their children have it but were told it’s ok, don’t worry, it’s harmless. How can it be harmless if you lose your field of vision and it’s progressive.

I think I need to contact my GP for some medication as I don’t know how I can get through the days worrying about my son losing his vision.

What eye condition does he have?

Optic disc drusen, I feel sick typing it

You really shouldn't have googled. The majority of people with optic nerve drusen wouldn't know they have it unless told by an optician/ophthalmologist.

Two of my children have it...no big deal.

They have a particular scan on their eye test just to watch it but other than that they are no different to my other children.

Sorry to hear this op.

How old is your son, and how was he diagnosed?

I just wanted to post as I do understand how you are feeling, I've been there. It was a pain like no other. The fact there is no cure for many of these eye conditions is the worst part of all- as parents we are always usually able to fix things for our children.

My son has a different genetic eye condition and is under Moorfields hospital in London, if you are anywhere near there I highly recommend you try to get referred there, they are fantastic.

In our case, google gave us the worst case scenario which was eventual complete blindness. We waited 5 weeks for a confirmed diagnoses and for those 5 weeks I couldn't function, I slept in bed with him every night. I couldn't believe this was happening.

When we finally saw a professor at Moorfields he very quickly explained we were more in the 'best case scenario' camp. The relief was immense.

So my point is, there is no reason why your son can't come under the best case scenario. Please don't torture yourself and assume the worst. The truth is, every person is different anyway and he will likely be monitored going forward to see if there are any changes.

What really helped me was finding a Facebook group for the condition. Seeing many many adults with the condition living fantastic lives, full of positivity despite their issues, has given me real hope.

Be kind to yourself, it's a real process to go through and I'm a few years down the line now. Day to day we don't even think about it anymore. I never thought that would happen.

Feel free to PM me x