Hi my name is Neta,
I think you are super brave for finding this site and talking about your rare condition. I feel me and you would have a lot to talk about if we become friends. Your condition is nothing but a metabolic deficiency that people around the world have no idea about. It does not make you less of a person. How I know is because the friends I do have remind me that I am a person even with me smelling up the place. I can imagine its hard for you as a man, but think about being a female. We are known for smelling like roses, so imagine when you are instead showered with a nasty smell. Anyway, please contact me any time on this forum or through my email at
Zenetam@yahoo.com. I would love to get to know you more. Also, I am soon going to start a YouTube channel about this disorder so at least please remember me!