A Very Misunderstood Condition, by Rosemary

Hi, my brother Robert has lived with NVLD all his life, he is now 65 years old. However, he was only diagnosed around 15 years ago and by that time it was almost too late to help him with his troubles at work, his social interactions and anxiety, just to name a few. He has little self awareness of his condition which doesn’t help. I remember as a child, my mother used to take him to be tested for dyslexia and to psychiatrists who could couldn’t pinpoint his problem. He is now retired and lives on his own near me.

He is able to look after himself but often needs help from me when faced with uncertainties. He is especially fearful of being scammed, and he is unable to learn from prior mistakes. He has had trouble with not complying with rules and following instructions at his volunteer workplaces and cannot find a companion to live out the rest of his life. (He was married but divorced 10 years ago). I feel very sad for him as I wish that he had been properly diagnosed as a child and processes put in place to make his adult life easier. I wonder if it is too late to seek tailored treatment at this late stage.

It’s nice to see more information appear on Google searches now than what there was a few years ago but it’s still a misunderstood condition and people with NVLD receive little compassion or understanding from others.

Thank you for the opportunity to tell my story.