Schwannamatosis!

[Adlon57]

Looking for anybody with Schwannamatosis not NF2 Neurofibromatosis type 2, it's just its so rare not even specialists/ neurologists know very much about it, first diagnosed as a medical condition in 1973, love to hear from anybody in similar condition, supposedly one in 40,000 people have it, think its a bit more than that, similar condition NF2 1-35,000! Benign growths on nerve on trunk, arms and legs are its 'highlights'? Adlon57