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Anyone know anything about Nystagmus?

(17 Posts)
Bond33 Sat 07-Feb-04 23:06:49

My 2 year old DD has just been diagnosed as having Nystagmus and I hardly know anything about it. When she started to walk, she always had her nose in the air (like she was extremely posh) and was constantly bumping into things and falling over. There is no need for her to wear glasses as she can see well as long as her head is in the right position, (she cannot see out of the front of her eyes) but I have been told that she will probably go blind and just wondered if this was a short or long term prognosis. Can anyone help?

SueW Sun 08-Feb-04 01:49:46

Have you seen this site ?

I understood a friend of ours has nystagmus - I'm fairly certain that's what he said it is - but he plays squash and drives a car although he does often hold his head at a funny angle so I was confused by the info given.

Fingers crossed for your daughter

Bond33 Sun 08-Feb-04 16:00:38

Thank you for your information it was really useful and I have replied to one of the women who also had a prem baby with nystagmus. The site said that there are a few sufferer's that can drive so I hope she will be lucky enough in the future as I want her to be as independant as possible.

Bond33 Sun 08-Feb-04 16:00:39

Thank you for your information it was really useful and I have replied to one of the women who also had a prem baby with nystagmus. The site said that there are a few sufferer's that can drive so I hope she will be lucky enough in the future as I want her to be as independant as possible.

Jimjams Sun 08-Feb-04 20:08:25

I don't know anything about nystagmus, but just a note about being blind. I taught someone once who was registered blind, but she wasn't - by which I mean she could see things. her condition was extremely rare and her vision was very poor but she was completely independent. She was South African living in the UK studying A levels. The only extra help she had was big type exam papers and extra time in exams (25%- same as dyselxics). She went onto university.

Good idea to contact the other person- meeting people in the same situation is a lifesaver.

aloha Sun 08-Feb-04 20:40:58

My friend has a son with this. There is an excellent support group which I'm sure you can find on the net (google Nystagmus and support). Her son has it quite severely but there was no question of his going blind. The flautist James Galway has it. If I find out more information I will let you know.

aloha Sun 08-Feb-04 20:45:57

I found this on the net too:
© Royal National Institute for the Blind

In Depth


Talking about your generation: Self help for people with nystagmus

Following the success of its first regional meeting in Blackpool a year ago, the Nystagmus Action Group is holding a second meeting in Sheffield this month. John Sanders, honorary chairman of the Group and full time financial journalist, explains that NAG is not just for children and shows how a small self-help group like NAG can tap into the resources of RNIB.
Enquire within
"I've had three enquiries from the Nystagmus Action Group newsletter this week", Helen Oldfield of the RNIB's Education Information Service tells me. "Ah well, I've passed on two enquiries to the Nystagmus Action Group, so we're about even", counters department manager Nancy Chambers.
I'm visiting the department's crowded, ground floor office in Great Portland Street, central London. The RNIB has kindly offered to include details of NAG booklets in a mail-out to 340 peripatetic teachers. This is one way in which a small group like ours can access the resources of RNIB and work together.
For those of you who haven't heard of nystagmus before, it's a complex condition which manifests itself in the form of an involuntary movement of the eyes, normally from side to side, which seriously reduces vision and causes a host of other, less well understood problems.
At least one in a thousand people has nystagmus, and one survey in Oxfordshire (1) found that one in 670 children has the condition, whichshould always be referred to an ophthalmologist. Nystagmus is normally diagnosed by the age of one, and often occurs with other eye conditions, such as glaucoma, childhood cataracts and coloboma. It can also occur with cerebral palsy, Down's Syndrome and many motor system diseases. Although one estimate suggests one in three cerebral palsy sufferers has nystagmus, its effects sometimes go unnoticed in such cases.
Nystagmus has a number of causes and is usually a symptom of an underlying problem in the eye or the neural pathways behind the eye. It is almost always present with albinism. Sometimes it is inherited, but in many cases there is no family history of the condition. There is no known cure and glasses and contact lenses will not correct nystagmus, although they should be worn if prescribed for another eye problem.
People also develop nystagmus in later life, sometimes on its own, sometimes as a symptom of multiple sclerosis and other diseases. Its effects in later life are less predictable and poorly documented. Being diagnosis specific, we don't aim to duplicate or compete with the work of RNIB or other charities and self help groups. However, we do see plenty of opportunities for cooperation. One of our tasks is to persuade our members that they should use RNIB, and that just because it's got the word `blind' in its title doesn't mean the RNIB caters only for those registered as blind.
It's rare now that one of our quarterly Focus newsletters goes out without at least one reference to RNIB. The June issue mentioned the Family Weekends in September, and prompted several enquiries to the RNIB.

aloha Sun 08-Feb-04 20:50:57

I found this on the net too:
© Royal National Institute for the Blind

In Depth


Talking about your generation: Self help for people with nystagmus

Following the success of its first regional meeting in Blackpool a year ago, the Nystagmus Action Group is holding a second meeting in Sheffield this month. John Sanders, honorary chairman of the Group and full time financial journalist, explains that NAG is not just for children and shows how a small self-help group like NAG can tap into the resources of RNIB.
Enquire within
"I've had three enquiries from the Nystagmus Action Group newsletter this week", Helen Oldfield of the RNIB's Education Information Service tells me. "Ah well, I've passed on two enquiries to the Nystagmus Action Group, so we're about even", counters department manager Nancy Chambers.
I'm visiting the department's crowded, ground floor office in Great Portland Street, central London. The RNIB has kindly offered to include details of NAG booklets in a mail-out to 340 peripatetic teachers. This is one way in which a small group like ours can access the resources of RNIB and work together.
For those of you who haven't heard of nystagmus before, it's a complex condition which manifests itself in the form of an involuntary movement of the eyes, normally from side to side, which seriously reduces vision and causes a host of other, less well understood problems.
At least one in a thousand people has nystagmus, and one survey in Oxfordshire (1) found that one in 670 children has the condition, whichshould always be referred to an ophthalmologist. Nystagmus is normally diagnosed by the age of one, and often occurs with other eye conditions, such as glaucoma, childhood cataracts and coloboma. It can also occur with cerebral palsy, Down's Syndrome and many motor system diseases. Although one estimate suggests one in three cerebral palsy sufferers has nystagmus, its effects sometimes go unnoticed in such cases.
Nystagmus has a number of causes and is usually a symptom of an underlying problem in the eye or the neural pathways behind the eye. It is almost always present with albinism. Sometimes it is inherited, but in many cases there is no family history of the condition. There is no known cure and glasses and contact lenses will not correct nystagmus, although they should be worn if prescribed for another eye problem.
People also develop nystagmus in later life, sometimes on its own, sometimes as a symptom of multiple sclerosis and other diseases. Its effects in later life are less predictable and poorly documented. Being diagnosis specific, we don't aim to duplicate or compete with the work of RNIB or other charities and self help groups. However, we do see plenty of opportunities for cooperation. One of our tasks is to persuade our members that they should use RNIB, and that just because it's got the word `blind' in its title doesn't mean the RNIB caters only for those registered as blind.
It's rare now that one of our quarterly Focus newsletters goes out without at least one reference to RNIB. The June issue mentioned the Family Weekends in September, and prompted several enquiries to the RNIB.

aloha Sun 08-Feb-04 20:51:53

There's also a US site at www.nystagmus.org.

motherinferior Mon 09-Feb-04 11:39:52

I wrote up nystagmus for RNIB a few months ago (not the piece Aloha's quoted, though). Give the helpline a ring if you haven't already?

Bond33 Wed 11-Feb-04 00:16:02

Thank you all for your help. We are currently attending the hospital every three months to have her eyesight checked and need to see a specialist every year. They have recently told me that she may be able to bluff her way through life for quite a while and that only her teachers will need to know about her condition so hopefully she will not be bullied at school. Apart from this problem she is clever and mixes well with other children so I suppose she will adapt to school quite well

prettycandles Wed 11-Feb-04 15:41:50

I know a girl who was born extremely prematurely and had nystagmus as a result. She dealt with it by looking at you out of the sides of her eyes - it gave her a very knowing expression. She's about 18 now, and as far as I know, has no problems in day-to-day life. She does occasionally do her sideways look, but it's no longer her 'standard' way of looking at things, it seems more of a habit than a need. She wears glasses, but plays school sports and seems absolutely ordinary.

Bond33 Wed 11-Feb-04 21:45:46

Thanks for that, that is really encouraging, has your friend always worn glasses or can nystagmus cause short sightedness do you know? Getting quite used to not being able to see all the television now as she now monopolises it.

prettycandles Thu 12-Feb-04 15:29:05

She didn't always wear glasses, but I don't remember when she started to. I've never talked to her about her 'development', but she's quite petite and, while she's perfectly intelligent, she's not quite on a par with the rest of her family (barristers, doctors etc), which I think is all part of her prematurity. Sorry, but I know virtually nothing about nystagmus - other than that she has it.

I wouldn't have thought that sitting very near the TV was good in any case. My two will often sit as close as they can to it, purely I think from curiosity, so perhaps it's a habit with her?

Have you tried the RNIB?

GeorgieVickyLou Mon 08-Aug-05 00:15:55

HI, my DD (16 weeks old) has just been diagnosed with Nystagmus (Nasty Agnes – as we have taken to calling it) I’ve sat searching the web for hours, reading how people with this have coped etc. I feel it is going to be a case of trail and error, but I am confident that as long as we are positive and encourage her and give her all the help and support we can this will not be an issue. I am worried for her as we all know children can be spiteful, she will need help at school and may be picked on because of this, she may not be able to ride a bike or take part in sports and all the other things most children love to do as her vision and perception will be poor but she can see and will hopefully adopt her own way of doing things and I’m sure that she will be strong enough as will your DD to get through anything. There are a lot worse things they could have been born with and I’m sure they wont let this affect them too much. I have not found anything in my searching that says she will go blind if anything the info I have read from personal accounts is that each individual finds ways improving their vision by adopting certain head positions by finding ways of dealing with stressful situation, by not allowing themselves from getting tired etc. I’m glad I’ve found some one else in the same position as me (Parent who had never heard of this before!) and it would be nice to hear how you are getting on from time to time. Hope this has helped in some way. Georgina.

jabberwocky Mon 08-Aug-05 03:20:40

I have had several patients with nystagmus. It varies in degree. The amount of vision decrease corresponds with the velocity of movement. Sometimes a spectacle prescription can improve vision to some extent although it is difficult to do on younger children. One thing that I have found on older patients is that they do much better on eye exams when I leave both eyes open and fog (or Blur) the eye that I am not testing. Covering one eye typically increases the frequency of movement and hence the blur. HTH

chonky Mon 08-Aug-05 06:46:12

Hi Bond33, my dd has mystagmus too. We're just heading out, but I'll come back later.

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