Living with Marcus Gunn syndrome

I’ve had this condition from birth and have never known anyone else who had it. I have no control over it whatsoever and am not really aware of when it happens. When I was very young, I had to attend a children’s eye hospital annually and I’d be given a toffee to chew so the doctor could see it happening but I was discharged at about school age and have just got on it with it since then.
I do find it highly embarrassing but I’m aware that a lot of people are worse off than me so it’s merely a case of either vanity or insecurity.
I’ve never really read up on it so I had no idea it was so rare until today. Nor did I realise that it was likely to be hereditary and I’m relieved that neither my 2 children nor 2 grandchildren have this.