Saturday, September 12, 2009
Welcome to Kjer to Share
I have Kjer's disease, also known as Kjer's Autosomal Dominant Optic Atrophy (ADOA). I have had vision loss since childhood. I was not formally diagnosed with Kjer's until 2007, when a simple blood test told me that I have a defect in the OPA1 gene. My main goal of Kjer to Share is to communicate with others who have the disorder. I look forward to chatting with other people who either have Kjer's or know someone who has the disease. For an overview of Kjer's see the wikipedia article for Kjer's disease.
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This is my sister’s blog…I am so very proud of her for creating this space for herself and others. She is a remarkable woman with great wisdom, insight, and knowledge. I have been tested for OPA1. My results are negative.
ReplyDeleteHey my name is Lynn and I am sixteen years old. My Dad and Step Mom found out that I had Kjers Optic Atrophy when I was four years old. It was a huge shocker because I ran around and played like a normal four year old girl. My vision is 20/400.I wish they would hurry up and find a cure for Kjers. I am very self concious about my low vision, thats why I hide the fact that I am legally blind. I don't look at all like I have a disability. I hate not being able to do normal teenage things, like driving! I just hope someday the will find a cure.
ReplyDeleteHi Lynn - thanks for posting on my blog. A few months ago, I met another 16 year old with Kjer's. You two should connect. She lives in California. Where do you live? I live in Northern California, near San Francisco. I am 39 and have never driven a car. Raised in a small town, but left there for Boston (great walkable city) and now I live in a beautiful area in CA where I don't have to drive. Seek out places to live that you can walk. Find a city college. It is a healthier lifestyle anyways. I have my doctorate in my field. I am married and have an 18 month old son. Don't wait for a cure. Live life to the fullest. Post anytime.
ReplyDeleteBest,
Melissa
The best thing you can do for her is help jer. And support her. A healthy diet and exercise can help. Also just know that kjers can be either fast or slow on the deterioration.
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