Congenital Nystagmus and Ocular Albinism

hollie · Jul 9th, 2009, 05:12 AM

My son was diagnosed with both congenital nystagmus and ocular albinism, they are both eye conditions and wondered if anybody else suffered with either or has children with it. Would be interested in learning from other peoples experiences.

Emmea12uk · Jul 10th, 2009, 16:44 PM

I have never heard of them. what are they?

cora437715 · Nov 22nd, 2009, 10:19 AM

I was born with both of the conditions that your son has been diagnosed with. I am now 27 and don't feel that it has stopped me doing the things I've wanted to do. I was given extra support at school and college, but the only downside is that I am not allowed to drive as my long distance vision is too poor.
If you've got any questions about the condition I'll be more than happy to answer them.

MrsB80 · Feb 9th, 2010, 18:54 PM

Hi Hollie,
My husband and 2 youngest daughters all have Congenital Nystagmus and on my husbands side his newphew, niece, cousin and uncle all have CN & ocular albinism if you need any advice or want to ask any questions just ask away

Jo x

jennymay · Jul 10th, 2011, 09:53 AM

My son is 7 months now and also has both CN and OA. I knew before I had him that he would be born with this. It runs in my family, all male have both and all females carry and pass on both. However don't worry about either problem to much as I have grown up around them. Most of the males in my family have very little problems with their vision, even if it isn't great, because they learn to deal with it. My cousin is a paramedic, my uncle a mechanic, and my dad did construction until he hurt his back. Also it get better in the first few years. It is scary at first because most babies born with it don't even focus until 4 months or so. My baby’s doctor sent us to a spiciest at four months to make sure my son wasn't just completely blind. But in the last few months he has taken giant steps and can focus and follow objects. Hope all this makes you feel better or let you know you are not alone.

Caezzybe · Jul 15th, 2011, 19:41 PM

My husband has nystagmus (it doesn't affect his ability to do anything). Our son appears to have inherited it from him (along with quite bad long-sightedness from both of us, he is +5.00 in one eye and +6.00 in the other). Logan had electrophysiology (electrodes on his head while looking at patterns on a screen to measure brain activity) at Great Ormond Street this week and they reckon his visual responses in his brain are fine, his eye health is OK and that the only issue affecting his vision is his long-sightedness for which he will have to wear glasses to prevent a squint.

Logan was referred to GOSH as he also has Down's Syndrome and they wanted to check up on his sight in general and his nystagmus in particular.

If you have worries about your son's eye conditions, I would ask for a referral for further investigation.

summer rain · Aug 6th, 2011, 04:24 AM

My SILs little boy has just been diagnosed with congenital nystagmus, his is very severe his eyes are in a continuous rolling motion from one corner to the other, they are not sure yet if its part of another condition or how his vision is; when they tried to look into the back of his eyes his pupils were too tiny

(he is 5 months)

Jul 9th, 2009, 05:12 AM	#1
hollie Mum (Mom) Active BnB Member Join Date: Nov 2007 Location: Cambridgeshire Posts: 73	Congenital Nystagmus and Ocular Albinism My son was diagnosed with both congenital nystagmus and ocular albinism, they are both eye conditions and wondered if anybody else suffered with either or has children with it. Would be interested in learning from other peoples experiences.

Status: Offline

Jul 10th, 2009, 16:44 PM	#2
Emmea12uk Pregnant (Expecting) BnB Addict Join Date: Mar 2008 Location: Hampshire UK Posts: 5,135	I have never heard of them. what are they?

Status: Offline

Nov 22nd, 2009, 10:19 AM	#3
cora437715 Trying to conceive (TTC) New BnB member Join Date: Nov 2009 Posts: 4	I was born with both of the conditions that your son has been diagnosed with. I am now 27 and don't feel that it has stopped me doing the things I've wanted to do. I was given extra support at school and college, but the only downside is that I am not allowed to drive as my long distance vision is too poor. If you've got any questions about the condition I'll be more than happy to answer them.

Status: Offline

Feb 9th, 2010, 18:54 PM	#4
MrsB80 Trying to conceive (TTC) Active BnB Member Join Date: Feb 2010 Location: Manchester Posts: 11	Hi Hollie, My husband and 2 youngest daughters all have Congenital Nystagmus and on my husbands side his newphew, niece, cousin and uncle all have CN & ocular albinism if you need any advice or want to ask any questions just ask away Jo x

Status: Offline

Jul 10th, 2011, 09:53 AM	#5
jennymay Mum (Mom) New BnB member Join Date: Jul 2011 Posts: 2	My son is 7 months now and also has both CN and OA. I knew before I had him that he would be born with this. It runs in my family, all male have both and all females carry and pass on both. However don't worry about either problem to much as I have grown up around them. Most of the males in my family have very little problems with their vision, even if it isn't great, because they learn to deal with it. My cousin is a paramedic, my uncle a mechanic, and my dad did construction until he hurt his back. Also it get better in the first few years. It is scary at first because most babies born with it don't even focus until 4 months or so. My baby’s doctor sent us to a spiciest at four months to make sure my son wasn't just completely blind. But in the last few months he has taken giant steps and can focus and follow objects. Hope all this makes you feel better or let you know you are not alone.

Status: Offline

Jul 15th, 2011, 19:41 PM	#6
Caezzybe Mum (Mom) Active BnB Member Join Date: Feb 2010 Location: South East England Posts: 783	My husband has nystagmus (it doesn't affect his ability to do anything). Our son appears to have inherited it from him (along with quite bad long-sightedness from both of us, he is +5.00 in one eye and +6.00 in the other). Logan had electrophysiology (electrodes on his head while looking at patterns on a screen to measure brain activity) at Great Ormond Street this week and they reckon his visual responses in his brain are fine, his eye health is OK and that the only issue affecting his vision is his long-sightedness for which he will have to wear glasses to prevent a squint. Logan was referred to GOSH as he also has Down's Syndrome and they wanted to check up on his sight in general and his nystagmus in particular. If you have worries about your son's eye conditions, I would ask for a referral for further investigation.

Status: Offline

Aug 6th, 2011, 04:24 AM	#7
summer rain Mum (Mom) BnB Elite Join Date: May 2010 Location: South East England Posts: 11,030	My SILs little boy has just been diagnosed with congenital nystagmus, his is very severe his eyes are in a continuous rolling motion from one corner to the other, they are not sure yet if its part of another condition or how his vision is; when they tried to look into the back of his eyes his pupils were too tiny (he is 5 months)

Status: Offline

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