Amish, Mennonite, and Hutterite
Genetic Disorder Database

Cystinosis

Disorder
OMIM #: #219800  (Click to access OMIM database)
Disorder: Cystinosis 
Also known as: Nephropathic cystinosis 
Clinical
Phenotype: lysosomal storage disorder, cystine accumulation in lysosomes, renal insufficiency, Fanconi syndrome, renal calculi, metabolic acidosis, polyuria, polydipsia, recurrent dehydration, hypophosphatemic rickets, photophobia, pancreatic insufficiency, hepatomegaly, splenomegaly, hypopigmentation in skin and hair, muscle wasting, myopathy, cerebral atrophy, hypothyroidism, proteinuria, glucosuria, aminoaciduria, various mineral deficiency in blood 
Seen In: Amish
Old Order Mennonite
Old Colony Mennonite
Unknown/Other Mennonite
Hutterite
Remarks:

Testing is available at LHSC.

Autosomal recessive 

Mutations
1   Amish  
Gene: CTNS
Base Change: G>A, at nucleotide 1354
Amino Acid Change: gly 339 --> arg
2   Old Colony Mennonite  
Gene: CTNS
Base Change:
Amino Acid Change: 57kb deletion, exons 1-10
Last updated: 2023-04-14 

References
Gahl WA, Thoene JG, Schneider JA. (2002) Cystinosis. N Engl J Med Jul 11;347(2):111-21.
PubMed ID: 12110740 
Rupar CA, Matsell D, Surry S, Siu V. (2001) A G339R mutation in the CTNS gene is a common cause of nephropathic cystinosis in the south western Ontario Amish Mennonite population. J Med Genet Sep;38(9):615-6.
PubMed ID: 11565547 
Shotelersuk V, Larson D, Anikster Y, McDowell G, Lemons R, Bernardini I, Guo J, Thoene J, Gahl WA. (1998) CTNS mutations in an American-based population of cystinosis patients. Am J Hum Genet Nov;63(5):1352-62.
PubMed ID: 9792862 

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