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Growth and pubertal development in nephropathic cystinosis

L Winkler1, G Offner, F Krull

  • 1Department of Paediatric Nephrology and Metabolic Disorders, Children's Hospital, Medical School Hannover, Federal Republic of Germany.

Insights

Nephropathic cystinosis patients experienced delayed puberty and impaired growth. Kidney transplantation with specific immunosuppressants promoted catch-up growth, while adult males may develop hypergonadotropic hypogonadism.

Area of Science:

  • Pediatric Endocrinology
  • Nephrology
  • Genetics

Background:

  • Nephropathic cystinosis is a rare genetic disorder affecting multiple organs, including kidneys.
  • Growth and pubertal development are significantly impacted in patients with this condition.

Purpose of the Study:

  • To evaluate growth and pubertal development in patients with nephropathic cystinosis.
  • To assess the impact of chronic kidney insufficiency and kidney transplantation on growth.
  • To investigate pubertal development and hormonal profiles in affected individuals.

Main Methods:

  • Retrospective analysis of 30 patients with nephropathic cystinosis.
  • Evaluation of growth rates in relation to glomerular filtration rate (GFR).
  • Assessment of pubertal development and hormonal levels (gonadotropins, estradiol, testosterone) in 17 patients.

Main Results:

  • Prepubertal growth velocity SDS remained stable above a GFR of 20 ml/min/1.73m2 but decreased below this threshold.
  • Successful catch-up growth was observed post-kidney transplantation with cyclosporine A and low-dose prednisolone, but not with azathioprine and high-dose prednisolone.
  • Delayed puberty onset occurred in all patients; adult males showed elevated gonadotropins and low-normal testosterone, suggesting hypergonadotropic hypogonadism.

Conclusions:

  • Kidney function is critical for maintaining growth velocity in nephropathic cystinosis.
  • Specific immunosuppressive regimens post-transplantation can facilitate catch-up growth.
  • Adult males with nephropathic cystinosis are at risk for developing hypergonadotropic hypogonadism.

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