Raising awareness for nystagmus

Nystagmus is the word we use to describe an involuntary oscillation of the eyes. While it can be a normal physiological response to visual and vestibular sensations, there are unfortunate pathological variations which cause visual impairment. It is a relatively common condition affecting one in every two to three thousand people in the UK, and researchers are very interested in trying to determine the causes of pathological nystagmus and to understand how it might be effectively treated.

Nystagmus network is a charity dedicated to improving patient information, support and scientific research into nystagmus. I was recently at their 3rd international nystagmus research workshop to present some research findings from an investigation into physiological nystagmus. The workshop was particularly interesting because of the scope of different scientific disciplines represented. The programme started on the first day with presentations on mathematical and animal models of nystagmus. On the second day we discussed the results of retinal imaging studies, the genetics of nystagmus, and the impact of living with nystagmus on the quality of life of patients. Presentations on the final day were focused on tentative suggestions for both surgical and medical treatments.

wobblywed2013Nystagmus Network are currently raising awareness of nystagmus in the run-up to their first International Nystagmus Awareness Day on November 6th. The awareness day has been labelled “Wobbly Wednesday” as nystagmus is often referred to as “wobbly eyes”. If you have been affected by nystagmus or know anyone who has you might wish to organise an event for the day, and you can register for a supporters pack by emailing info@nystagmusnet.org. Alternatively there is a Facebook group where supporters can interact with each other.

“Remember, remember, the 6th of November”.

3 thoughts on “Raising awareness for nystagmus

  1. I am to waiting to see 6th of November or wobbly eyes day because my friend already faces this problem and he is so disturb by this so 6th November has very proud full day for every Nystagmus person and nice forward posting.

  2. My 13 yr old daughter was diagnosed with Nystagmus when she was a year old. I had never heard of it before then. I am very excited for Wobbly Wednesday to help raise awareness.

  3. My 18 month old son has Nystagmus and was diagnosed in February this year, I had never even heard of it before then and 99% of the parents I am in touch with are in the same situation. Considering this is a condition that affects 1 in 1000 people that’s a shame!
    Wobbly Wednesday is such a fantastic idea to help raise awareness of this! I was so happy to see this blog! I am holding a charity firework night for my friends and family on the day 🙂

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