If you go to the "_link_s" portion of the website and look at the article from the New England Journal article, there are multiple pictures there of both children and adults.

It'd be a good idea to talk to your geneticist about testing (blood test). I'd be happy to try and answer any other questions you might have privately at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it

Gretchen--genetic counselor, Johns Hopkins University