I'm 73 and newly diagnosed with this condition and awaiting a treatment plan. I'm pretty old but otherwise fit and active and in good health, apart from the odd creaky joint, and have a healthy lifestyle. I understand this is a fairly rare condition. It would be good to share experiences with people already living with it. What are the treatments like? Do the symptoms get worse (I haven't really noticed any yet). It would be good to have some idea of what I might expect.