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Heimler Syndrome 2

OMIM ID:

autosomal recessive?

Heimler Syndrome 2

Alternate Names

sensorineural hearing loss with enamel hypoplasia and nail defects
peroxisome biogenesis disorder 4C
PBD4C

Defective Genes

PEX6

Clinical Characteristics

Ocular Features

Several cases have been reported with macular dystrophy and ‘salt-and-pepper’ mottling of the RPE extending to the midperiphery with foveal sparing.  Autofluorescence with hyper- and hypo-autofluorescent dots has been observed in the mottled areas of the RPE.  Spectral domain OCT has shown loss of the inner/outer segment boundary with RPE thinning and multiple retinal cysts but the ERG does not show rod-cone dysfunction. Visual acuity and the ocular fundus were normal in one patient until the age of 29 years when her vision dropped to 20/200 in one eye and 20/40 in the other.

Systemic Features

Primary dentition may be normal but secondary teeth have enamel hypoplasia (amelogenesis imperfecta).  The nails have Beau lines (transverse ridges) and leukonychia (white spots).  Severe sensorineural hearing loss develops sometime in the first year or two of life and it may be unilateral. At least one patient was documented to have had normal audiological test results until the age of 3 years.

Psychomotor development is normal at least until sensory deprivation occurs.

Genetics

Inheritance

This is a rare syndrome of ectodermally derived tissue which results from compound heterozygous mutations in the PEX6 gene (6p21.1).  A pair of monozygotic twin girls with this syndrome has been reported.  Parents are phenotypically normal.  No instance of parent-to-child transmission has been noted and it seems likely that this is an autosomal recessive disorder.

Another form of Heimler syndrome (234580) but with compound heterozygous mutations in the PEX1 gene (7q21.2) has been reported.

Pedigree

Autosomal recessive

In order for autosomal recessive disorders to be expressed, offspring generally must inherit two mutations, one from each carrier parent.  Carriers with only one mutation, such as the parents, do not have clinical disease.  Note that carrier parents can expect that 1 in 4 children (25%) will inherit both mutations and have the disorder, 2 in 4 children (50%) will be carriers like their parents, while 1 in 4 children (25%) inherit neither mutation.

Image
Sample pedigree of autosomal recessive inheritance

In order for autosomal recessive disorders to be expressed, offspring generally must inherit two mutations, one from each carrier parent. Carriers with only one mutation, such as the parents, do not have clinical disease. Note that carrier parents can expect that 1 in 4 children (25%) will inherit both mutations and have the disorder, 2 in 4 children (50%) will be carriers like their parents, while 1 in 4 children (25%) inherit neither mutation.

Treatment & Management

One patient has been treated with carbonic anhydrase inhibitors with apparent stabilization of vision.  Low vision aids and assistive hearing devices are likely of benefit for at least some patients.

Selected Resources

Web Resources

Publications

Displaying 1 - 6 of 6

Macular dystrophy in Heimler syndrome

PubMedID: 21366429

Ophthalmic manifestations of Heimler syndrome due to PEX6 mutations

PubMedID: 29676688

Sensorineural deafness, enamel abnormalities and nail abnormalities: a case report of Heimler syndrome in identical twin girls

PubMedID: 16530715

Sensorineural hearing loss and enamel hypoplasia with subtle nail findings: another family with Heimlerʼs syndrome

PubMedID: 12514367

Sensorineural hearing loss, enamel hypoplasia, and nail abnormalities in sibs

PubMedID: 2063923

Spectrum of PEX1 and PEX6 variants in Heimler syndrome

PubMedID: 27302843