A Day of Hope: Nystagmus Awareness Day

Hi Blog world,

As the title says, today, November 2, is Nystagmus Awareness Day, also known as “Wobbly Wednesday” to my British Friends,  it is a day of hope for me.

Nystagmus, for those of you who don’t know, is an eye condition where my eyes move back and forth. There is no cure for this condition, and its often misunderstood by the general public.

For people from our Nystagmus community we use this day as a fundraiser; these funds are used to help find a cure and the causes of the different kinds of Nystagmus (Congenital and Acquired) .  Not only do we use this day to help raise funds for the medical community; The Nystagmus community provides support for parents of children who have this condition, support for family members who may know someone in their family who is affected by Nystagmus, and peer-to-peer support for people who live with the condition.

For many parents whose babies are just diagnosed with the condition, they are concerned and want what’s best for their child; they often worry about their child’s future; for those of us who lived with the condition since birth,  we can offer tips and advice to help the child have the best possible future.

As for the people who have Nystagmus they offer peer-to-peer mentoring, which offers advice for things that may be a struggle, such as, not being able to drive, how to disclose their Nystagmus during a job interview and  other topics, with the peer-to-peer mentoring and the right support from teachers, parents, friends, family, and the medical community people with Nystagmus can have a full and active life.

For more information about Nystagmus and what you can do to support the community or  a loved one affected by this condition please visit:

http://nystagmus.org/new/

https://www.facebook.com/groups/65729508331/

Thank you for your support on the very special day.

Blog soon,

Amanda Gene

 

 

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