Ophthalmic Manifestations
of Danon Disease
F. Ryan Prall, MD,
1
Arlene Drack, MD,
1
Matthew Taylor, MD, PhD,
2
Lisa Ku, MS,
2
Jeffrey L. Olson, MD,
1
Darren Gregory, MD,
1
Luisa Mestroni, MD,
2
Naresh Mandava, MD
1
Purpose: To describe the ophthalmic findings in patients with Danon disease, an X-linked condition causing
cardiomyopathy in males and females.
Design: Retrospective case series.
Participants: Patients with genetically proven Danon disease.
Methods: Retrospective chart review of complete eye examinations including electroretinogram, visual
fields, and fluorescein angiography.
Results: Five females (4 affected) and 2 affected males were examined. The 4 affected females
demonstrated a peripheral pigmentary retinopathy. Lens changes, myopia, abnormal electroretinogram and
visual fields were also found. The males demonstrated a near-complete loss of pigment in the retinal pigment
epithelium.
Conclusion: We report the first description of a characteristic retinopathy in patients with Danon disease
and the first extracardiac manifestations in affected females. Retinopathy potentially could be used to identify
asymptomatic carriers. Ophthalmology 2006;113:1010 –1013 © 2006 by the American Academy of Ophthalmol-
ogy.
Danon disease is an X-linked cardioskeletal myopathy first
described by Danon et al in 1981 in a report of 2 boys with
cardiomyopathy, myopathy, and mental retardation.
1
It is
caused by a mutation in the lysosome-associated membrane
protein-2 (LAMP-2) gene, which leads to a deficiency of a
major lysosomal membrane protein, and is characterized
pathologically by intracytoplasmic vacuoles containing au-
tophagic material and glycogen in skeletal and cardiac mus-
cle cells.
1–4
The clinical triad of cardiomyopathy, myopathy, and
variable mental retardation in males has been substanti-
ated by several reports and most notably by Sugie et al,
5
who reported their findings in 38 patients with Danon
disease. Female mutation carriers show a milder pheno-
type, which has to date been essentially restricted to
cardiac disease. Cardiac disease in males includes Wolff–
Parkinson–White (WPW) syndrome and cardiomyopathy
that is typically hypertrophic, although dilated forms
have been described. Females are more likely to manifest
only WPW, but both dilated and hypertrophic cardiomy-
opathies and skeletal myopathies may be encountered.
5
Cardiac complications in males are often severe; many
patients require permanent pacemakers and heart trans-
plantation. Myopathy is typically mild and may be
asymptomatic. Often it is only evidenced by an increase
in serum creatine kinase levels and abnormalities in
electromyography. When symptomatic, patients present
with proximal limb muscle weakness that is slowly pro-
gressive. Mental retardation in the mild range affects an
estimated 70% of males.
5
Ophthalmic findings have not been considered part of the
classic phenotype of this disease and have received only
limited attention in the literature. The disorder is likely
unfamiliar to many ophthalmologists. Two reports have
mentioned ocular findings in males from families with
Danon disease, but detailed descriptions of the ocular phe-
notype in Danon disease have not been published. Laforet
et al
6
described a patient with decreased visual acuity and a
“bilateral maculopathy” and Lacoste-Collin et al
7
reported
another patient with decreased vision and a “diffuse
choriocapillary atrophy.” We are unaware of descriptions
of ocular manifestations of disease in females. Herein we
describe the ophthalmic findings in 2 males with Danon
disease along with the discovery and description of eye
disease in females.
Materials and Methods
Seven patients with Danon disease were examined in the authors’
university-based retina practice. Five females and a male from a
single family were examined as well as another unrelated male. A
retrospective review of the records was performed. Institutional
review board exemption was obtained.
Originally received: June 17, 2005.
Accepted: February 13, 2006. Manuscript no. 2005-481.
1
Department of Ophthalmology, University of Colorado, Aurora, Colorado.
2
Cardiovascular Institute, University of Colorado, Aurora, Colorado.
Presented as a poster at: American Academy of Ophthalmology meeting,
October 2005, Chicago, Illinois.
Correspondence to Dr Naresh Mandava, 1675 North Ursula Street, PO Box
6510, Mail Stop F731, Aurora, CO 80045-0510.
1010 © 2006 by the American Academy of Ophthalmology ISSN 0161-6420/06/$–see front matter
Published by Elsevier Inc. doi:10.1016/j.ophtha.2006.02.030