We’re about to launch our very first local nystagmus network in Manchester. Your host, Nystagmus Network trustee, Marie Turnbull, is arranging a date, time and venue for your first get together. We’d like as many people as possible to be involved.
If you’d like to come along, please contact us by email and we’ll send you all the details.
Thank you!
The Nystagmus Network is delighted to be supporting a Nystagmus Patient Information Day, running at Moorfields, London on Saturday 24 November.
Moorfields Eye Hospital is holding an information day for adults with nystagmus since childhood. The day will allow you the opportunity to directly influence the patient pathway from diagnosis to treatment and the support services available.
The structure of the day will involve:
Sue, from the Nystagmus Network, will be at the event.
Lunch and coffee will be provided, and places (free of charge) will be allocated on a first come, first served basis.
Tickets close: midnight Friday 9 November
For enquires please contact Maria Theodorou at: [email protected].
This day is funded by Friends of Moorfields with support from Nystagmus Network.
We will not be discussing children services at this meeting. Some of the content and discussions had may not be suitable for children. We are unable to offer childcare facilities on the day.
To book your place, please click here.
The event is hosted by NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology.
Published today as part of National Eye Health Week, a new YouTube video by Emily Davison, also known online as the Fashioneyesta, tells what nystagmus is and how it affects daily life.
Watch Emily’s video here.
Nystagmus Network’s Rachel, writes:
Here at the Nystagmus Network we’re always looking for new opportunities for our members. Recently we came across a charity awarding grants to blind and partially sighted children for music lessons.
The Amber Trust offers grants for singing or instrumental lessons, music therapy and concert tickets to children aged 5 and over. They also offer ‘Little Amber Music Awards’ for under 5s. As a parent of 3-year-old twins with nystagmus, this was particularly interesting to me!
Both my boys have shown a keen interest in music from a very young age. They spend a large part of each day singing, playing their toy guitars and putting on ‘shows’ for their little sister.
We applied for the grant for both boys and heard back within a couple of weeks that they have been successful. We’re now very excited for their first interactive session. They’ll now receive 4 sessions a year until they turn 5, as well as some tips and suggestions for activities we can do at home in between.
We will keep you posted!
With thanks to Mike Hughes, our volunteer benefits adviser, who has today supplied a newly updated edition of his booklet on nystagmus and benefits.
The new version, taking into account all the latest changes in legislation, is now available free of charge. Download your copy here.
Mike will, of course, be at Open Day to answer all your benefits queries in person.
Over the summer holidays we followed Harry’s progress as he underwent the Anderson Kestenbaum procedure to address the head turn associated with his nullpoint. Today we hear from Harry’s Dad, Ian, how Harry is getting on, 4 weeks after his operation.
Ian writes:
“Harry’s eyes are now nothing but a slight irritation and, apart from eye drops 4 times a day, he doesn’t need any pain relief. Other than a bit of redness around the edges, his eyes show very little sign of the trauma they’ve been through. Harry says they’re still itchy. This is because the stitches still haven’t dissolved and they won’t until around 8 weeks post op.
“Harry’s vision is on a par with pre-op which is really pleasing. He still needs to wear glasses, but now minus the prisms.
“We attended a meeting yesterday with the consultant. 4 weeks post op he was delighted with the healing process (Harry is about 80% through the recovery) and with the results of the operation. I have to say my wife and I and, even more importantly, Harry are delighted with the outcome, too. Harry doesn’t need to see the consultant for 6 months now, so, in effect, he’s signed off.
“The photo was taken the day before his meeting with the Consultant, his first day back at school. You will see he’s looking straight at the camera.
“Even though we had taken our time and researched and thought we knew what to expect, seeing your child going through this surgery is tough. The first few days, in particular, are not nice. There’s the uncertainty over the success of the operation and the torment of seeing your child suffering (Harry was a very good patient). On the Sunday after the operation, when Harry expressed some concerns, we found it really difficult. You start doubting whether you’ve made the right decision and question whether it would have been better to leave well alone. So I don’t want to make it sound likes it’s been a walk in the park, it really isn’t. However, when you see photographs like this, with a beaming smile looking straight at the camera then it does make it feel it was worthwhile.
“Whilst this has been a roller-coaster of a journey, we’re so pleased we have done this. I also know this won’t work for everyone. I just hope Harry’s experience can help others, considering this course of action, understand just what it entails.”
The Nystagmus Network does not endorse or otherwise any particular medical treatment. We are simply sharing one family’s experience. We are grateful to Ian and Harry for sharing their story so generously with us and we wish Harry well as the new school term begins.
Two ‘Information Days for Professionals’ events at Queen Alexandra College (QAC) may be of interest to Connexions and Careers Advisors, DEA’s, Work Coaches, Employment Advisors and Social Workers, Teachers and Learning Support Assistants, SENCOs, Sensory Support Teams, Local Education Authority Employees.
These FREE events provide the opportunity to meet staff and students and discover more about Queen Alexandra College.
The dates are Thursday 11 October and Tuesday 20 November, 10am – 3pm.
Your day at QAC will give you the opportunity to learn more about: QAC’s 16-25 curriculum; advance2work – opening the doors to employment for people with disabilities; independent living skills and the extended curriculum; residential provision; orientation and mobility; an overview of assistive technology; Independence Plus – Supported Living.
Please book your place early as numbers are limited. Call 0121 428 5041 or email [email protected].
When an infant is diagnosed with nystagmus, it’s very important to ensure that the child continues to have regular sight tests and check ups to make sure that other problems with the vision are identified and treated. That’s the message coming loud and clear from a recent report by the UK Vision Strategy team.
As a parent or carer, we’re best placed to notice any early signs that things are not as they should be. These can be related to behaviour as well as more obvious indications. We also need to know about sight testing available and remember that it’s free to everyone under the age of 16.
For full details, please visit the Association of Optometrists website.
With so much talk at the moment about plastic pollution, here’s one small way in which the vision impaired community can help. We can stop flushing our used contact lenses down the loo!
In a BBC article this week, Environment Correspondent, Matt McGrath, explains how discarded disposable contact lenses can end up as plastic waste in the ocean. So the next time you remove your lenses, please put them in the bin.
Read the full BBC article here.
Picture: GETTY IMAGES
Ella is a third year student at Nottingham Trent University. She just happens to have nystagmus. She is full of advice and inspiration for other young people with nystagmus.
Hear her interview with RNIB Connect Radio.
