Fertility Management in Cystinosis: A Clinical Perspective

Cystinosis is a rare, inherited, lysosomal storage disorder characterized by the progressive accumulation of intralysosomal cystine and subsequent organ and tissue damage. The kidneys are the first and most severely impacted organ. Although cystinosis was once considered a fatal pediatric disease, p...

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Main Authors: Craig B. Langman, Rowena B. Delos Santos, Cybele Ghossein, Andrea M. Atherton, Elena N. Levtchenko, Aude Servais
Format: Article
Language:English
Published: Elsevier 2024-02-01
Series:Kidney International Reports
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Online Access:http://www.sciencedirect.com/science/article/pii/S2468024923015723
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author Craig B. Langman
Rowena B. Delos Santos
Cybele Ghossein
Andrea M. Atherton
Elena N. Levtchenko
Aude Servais
author_facet Craig B. Langman
Rowena B. Delos Santos
Cybele Ghossein
Andrea M. Atherton
Elena N. Levtchenko
Aude Servais
author_sort Craig B. Langman
collection DOAJ
description Cystinosis is a rare, inherited, lysosomal storage disorder characterized by the progressive accumulation of intralysosomal cystine and subsequent organ and tissue damage. The kidneys are the first and most severely impacted organ. Although cystinosis was once considered a fatal pediatric disease, patients with cystinosis are living well into adulthood with advances in medical care, including kidney transplant and early and continuous use of cysteamine therapy. This increase in life expectancy has revealed an extrarenal phenotype of cystinosis that emerges in adolescence and adulthood, affecting nearly all body systems, including the endocrine and reproductive systems. As individuals with cystinosis are planning for the future, reproductive health and fertility have become areas of increased focus. This narrative review aims to summarize the current understanding of reproductive health and fertility in patients with cystinosis and discuss practical considerations for monitoring and managing these complications.
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publisher Elsevier
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series Kidney International Reports
spelling doaj-art-7cba2170dbc24749ae64d388b6e1892e2025-08-20T02:05:49ZengElsevierKidney International Reports2468-02492024-02-019221422410.1016/j.ekir.2023.10.030Fertility Management in Cystinosis: A Clinical PerspectiveCraig B. Langman0Rowena B. Delos Santos1Cybele Ghossein2Andrea M. Atherton3Elena N. Levtchenko4Aude Servais5Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA; Correspondence: Craig B. Langman, Feinberg School of Medicine, Northwestern University, 211 E Chicago Ave, MS37, Chicago, Illinois 60611, USA.Washington University in St Louis, St Louis, Missouri, USAFeinberg School of Medicine, Northwestern University, Chicago, Illinois, USAHorizon Therapeutics plc, Deerfield, Illinois, USAAmsterdam University Medical Centre, Amsterdam, The NetherlandsNecker Enfants Malades University Hospital, APHP; Imagine Institute, Paris, FranceCystinosis is a rare, inherited, lysosomal storage disorder characterized by the progressive accumulation of intralysosomal cystine and subsequent organ and tissue damage. The kidneys are the first and most severely impacted organ. Although cystinosis was once considered a fatal pediatric disease, patients with cystinosis are living well into adulthood with advances in medical care, including kidney transplant and early and continuous use of cysteamine therapy. This increase in life expectancy has revealed an extrarenal phenotype of cystinosis that emerges in adolescence and adulthood, affecting nearly all body systems, including the endocrine and reproductive systems. As individuals with cystinosis are planning for the future, reproductive health and fertility have become areas of increased focus. This narrative review aims to summarize the current understanding of reproductive health and fertility in patients with cystinosis and discuss practical considerations for monitoring and managing these complications.http://www.sciencedirect.com/science/article/pii/S2468024923015723cystinosisextrarenal manifestationsfertilitylysosomal storage disordernephropathic cystinosisreproductive health
spellingShingle Craig B. Langman
Rowena B. Delos Santos
Cybele Ghossein
Andrea M. Atherton
Elena N. Levtchenko
Aude Servais
Fertility Management in Cystinosis: A Clinical Perspective
Kidney International Reports
cystinosis
extrarenal manifestations
fertility
lysosomal storage disorder
nephropathic cystinosis
reproductive health
title Fertility Management in Cystinosis: A Clinical Perspective
title_full Fertility Management in Cystinosis: A Clinical Perspective
title_fullStr Fertility Management in Cystinosis: A Clinical Perspective
title_full_unstemmed Fertility Management in Cystinosis: A Clinical Perspective
title_short Fertility Management in Cystinosis: A Clinical Perspective
title_sort fertility management in cystinosis a clinical perspective
topic cystinosis
extrarenal manifestations
fertility
lysosomal storage disorder
nephropathic cystinosis
reproductive health
url http://www.sciencedirect.com/science/article/pii/S2468024923015723
work_keys_str_mv AT craigblangman fertilitymanagementincystinosisaclinicalperspective
AT rowenabdelossantos fertilitymanagementincystinosisaclinicalperspective
AT cybeleghossein fertilitymanagementincystinosisaclinicalperspective
AT andreamatherton fertilitymanagementincystinosisaclinicalperspective
AT elenanlevtchenko fertilitymanagementincystinosisaclinicalperspective
AT audeservais fertilitymanagementincystinosisaclinicalperspective