Should Parents Post Photos of Their Children with Parry Romberg Syndrome?

I often wonder if Parents think about the effects of posting images of their own child suffering from Parry Romberg's Syndrome on a cover of a magazine .
Often the parent makes the decision for the young child without their approval.
The stories I have read about a few young patients with Parry Romberg Syndrome is done with the best of intentions I am sure.
BUT, are these photo's doing more harm than good to a young teen girl who see's her face and the facial damage the syndrome has caused plastered on a national publication that millions will view? I would have been horrified to say the least if this was done to me at the age of 13 or so.
Children that have Parry Romberg Syndrome do not like to have their photo taken.
I HATED IT.
When my parents realized this they quietly removed the huge famaily portrait from my brother's Bar Mitzvah from the Living Room Wall.
My face was used for medical publications that did not show my identity. This I feel was for the good of medical research.