Unlike more common kidney stones, cystine stones occur in people born with cystinuria—a rare, lifelong, and serious genetic disorder. Because cystinuria is genetic, other family members may also have it.
Cystinuria results in the ongoing formation of a specific type of kidney stone called a “cystine kidney stone.” When cystinuria is not properly managed, you will continue to form stones. The consequences of repeat stones can affect many aspects of your life.
Distinct from other types of kidney stones, cystine stones are often larger, harder, and more frequent. Due to the larger stone size, cystine stones may be more difficult to pass, often requiring surgical or urological procedures (procedures related to the urinary tract) to remove.
Whether you have had 1 stone or 35 stones, the thought of having another can be excruciating. But beyond the unpredictable pain and stress involved, each stone may require surgery and put your kidneys at risk for long-term damage such as renal insufficiency and end-stage renal disease.
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Join the Cystinuria Resource: Rare Together community on Facebook. This group is dedicated to individuals and families affected by cystinuria. This page offers information on cystinuria, as well as tips and advice on how to manage it, with the goal of preventing the next cystine stone.