I am now 58 and I live in Australia. It wasn’t until I passed my first kidney stone when I was 22 that I was diagnosed with Cystinuria. Since then I have had multiple surgeries, from major surgery removing staghorn stone to keyhole surgery to laser using a camera. At present I have a stone causing partial blockage to one of my kidneys so looks like another surgery coming up. I have not been without stone in my kidneys since my early thirties, but I am an enigma because even with stone I am asymptomatic. This is both a blessing and a curse, a blessing because I don’t have constant pain, a curse because I don’t know when my stones are building up. I have yet to hear of even one other person who is completely asymptomatic. I also have Ankylosing Spondylitis (a form of rheumatoid arthritis.

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