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Parana hard-skin syndrome

MedGen UID:
337964
Concept ID:
C1850079
Disease or Syndrome
Synonym: Parana Hard Skin Syndrome
SNOMED CT: Parana hard skin syndrome (783013001); Hard skin syndrome Parana type (783013001)
 
Monarch Initiative: MONDO:0009838
OMIM®: 260530
Orphanet: ORPHA2812

Definition

A rare genetic skin disorder with characteristics of very early-onset of progressive skin thickening over the entire body (except for eyelids, neck and ears), progressively limited joint mobility with gradual freezing of joints and eventual severe chest and abdomen movement restriction, manifesting with restrictive pulmonary disease, which may lead to death. Additional features include severe growth restriction and osteoporosis. There have been no further descriptions in the literature since 1974. [from SNOMEDCT_US]

Clinical features

From HPO
Severe postnatal growth retardation
MedGen UID:
347510
Concept ID:
C1857641
Finding
Severely slow or limited growth after birth, being four standard deviations or more below age- and sex-related norms.
Abnormal abdomen morphology
MedGen UID:
866551
Concept ID:
C4020869
Anatomical Abnormality
A structural abnormality of the abdomen ('belly'), that is, the part of the body between the pelvis and the thorax.
Restricted chest movement
MedGen UID:
870567
Concept ID:
C4025015
Finding
Respiratory insufficiency
MedGen UID:
11197
Concept ID:
C0035229
Pathologic Function
Impairment of gas exchange within the lungs secondary to a disease process, neoplasm, or trauma, possibly resulting in hypoxia, hypercarbia, or both, but not requiring intubation or mechanical ventilation. Patients are normally managed with pharmaceutical therapy, supplemental oxygen, or both.
Abnormality of the skin
MedGen UID:
1845238
Concept ID:
C5848159
Anatomical Abnormality
An abnormality of the skin.

Term Hierarchy

CClinical test,  RResearch test,  OOMIM,  GGeneReviews,  VClinVar  
  • CROGVParana hard-skin syndrome
Follow this link to review classifications for Parana hard-skin syndrome in Orphanet.

Recent clinical studies

Diagnosis

Mau U, Kendziorra H, Kaiser P, Enders H
Am J Med Genet 1997 Aug 8;71(2):179-85. doi: 10.1002/(sici)1096-8628(19970808)71:2<179::aid-ajmg11>3.0.co;2-b. PMID: 9217218
Cat I, Magdalena NI, Marinoni LP, Wong MP, Freitas OT, Malfi A, Costa O, Esteves L, Giraldi DJ, Opitz JM
Lancet 1974 Feb 9;1(7850):215-6. doi: 10.1016/s0140-6736(74)92515-x. PMID: 4129896

Prognosis

Mau U, Kendziorra H, Kaiser P, Enders H
Am J Med Genet 1997 Aug 8;71(2):179-85. doi: 10.1002/(sici)1096-8628(19970808)71:2<179::aid-ajmg11>3.0.co;2-b. PMID: 9217218

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