Reproductive Health and Cystinosis

You may wonder if a person with cystinosis can have children. The answer is complicated because cystinosis may have a serious impact on a person’s reproductive abilities, especially if that person goes untreated for a long time. People with untreated cystinosis usually reach puberty later than people who don’t have cystinosis.1

Men with cystinosis may experience hypogonadism, or a decrease in testosterone.1,2 Infertility is a common problem.2 Although men with cystinosis do retain some degree of sexual function, none have ever been known to father a child.2 Sperm banking, IVF, and donor sperm may be options to consider in family planning.1,3

Though women with untreated cystinosis also reach puberty a little later in life, they tend to have normal reproductive functions. Several women with cystinosis have had successful pregnancies and delivered healthy babies.1,3

Speak to your doctor to learn more about sexual health and planning for a family while managing cystinosis.


  1. Nesterova G, Gahl WA. Cystinosis: The evolution of a treatable disease. Pediatr Nephrol. 2013;28:51-59.
  2. Chik CL, Friedman A, Merriam GR, Gahl WA. Pituitary-testicular function in nephropathic cystinosis. Ann Intern Med. 1993;119(7):568-575.
  3. Cystinosis Transitioning Guide, Cystinosis Research Network website. Available at Accessed August 20, 2015.