Anyone has "Schwannamatosis" in Ireland/Northern Ireland/UK?

[Adlon57]

I have Schwannamatosis or sometimes referred to as NF3, no not Neurofibromatosis Type 2 or NF2. It is a very rare condition, but I have no one to compare 'notes' with Neurologist specialist's are roughly able to give me a rough outlook, but in reality I need a fellow sufferer to help 'groaning' with, swap symptoms, tell stories about one's progress or otherwise with, it will help other sufferers with their similar plight? There must be someone out there somewhere? Ok! it was only really diagnosed as a medical condition in 1973, ironically the same year I showed my first symptoms myself, having surgery for my first benign growth/tumour, I am 62 years of age!