Hiya mike! I come from Burnley Lancashire .. I had broken bones without knowing wen I got diagnosed (ribs, collar bone,) also the top of my spine fused together , so I’ve lost an inch in height . I was only 5 ft anyway lol. I’m 4 /11 now.. My kidneys were tht bad I couldn’t have my sisters stems even tho she was a match for me.. I was really really poorly for a full year b4 they found out what was wrong . My cousin who is jst 50 has been diagnosed with the same thing. Now thts very bizarre…I go to the Christi hospital in Manchester every 3 months. Friend of mine has done over ten years now, she was only 40 at the tym to.. Anyway we are all ere to tell the tale.
