Blind and Visually Impaired Community
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Recent LHON diagnosis (self.Blind)
submitted by Bennboobah
My mother about a year or so ago, was given a genetic test to determine that she had LHON and an extremely rare variant of it. After talking with her a few days ago, it prompted me to look into the mutation and I realized how at risk I am for this. I am 29 year old male and very scared. Im not looking for medical advice as more life advice and if I am over reacting on my part or not. Thank you for any information and assistance for this extremely rare blindness.
Fudgeisyummy 1 points 2y ago
Hi, my dad was recently diagnosed with LHON. My advice: research as much as you can, but do so a little at a time. There are things you can do as preventative measures, such as staying away from certain meds, cigs, alcohol. Also there are groups that meet regularly to discuss their own experiences and doctors who meet publicly to discuss genetic treatment advances. Books such as Radical Compassion and Dancing with Elephants are great to dive into. Remember you can live a happy life if you have extreme health issues/ disability. It’s a huge shift, but you can be happy!
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