Download Juvenile Macular Degeneration

Juvenile Macular
Degeneration
Helping Teachers and Parents Understand
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Juvenile Macular Degeneration
Helping Teachers and Parents Understand
What is Juvenile Macular Degeneration
Juvenile Macular Degeneration, or juvenile macular dystrophy (JMD) as it is actually
known, is an inherited eye condition that affects the child’s central vision, which is found in
the macula, or center of the retina. The retina is the part of the eye that contains the light
sensitive cells that send the messages about what a person is looking at to the brain. The
macula is the center part of the retina and is responsible for all of our central vision as well
as most of the color vision and fine details that are seen. There are several different types of
dystrophy that affect the eyes in different ways. Each type is classified as either recessive or
dominant; recessive types mean that the patient inherited a recessive gene from both parents
which caused their condition and dominate means that the patient inherited only one
dominate gene which caused the condition. In some types, the cells of the macula die
gradually. In other types of dystrophy,
tiny abnormal blood vessels grow into
the macula; these vessels are fragile and
can leak and cause scaring to the
macula.
Juvenile Macular Degeneration was first
reported in 1901. Stargardt’s affects
between 30,000 and 50,000 Americans and
affects approximately 1 in 10,000 children.
Children with JMD will gradually lose
part or all of their central vision.
Children may complain of not being able to identify colors or that their night vision isn’t very
good. Children with JMD may also have trouble seeing the board at school or complain that
straight lines actually look bent to them or that there are dark spots in their center field of
vision.
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Types of Macular Dystrophy Commonly Seen in Children
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Stargardt’s Macular Dystrophy-Fundus Flavimaculatus: A recessive form that is the
most common. There is a wasting away of an area of the retina which causes a ring
of white or yellow spots. The retinal pigment epithelium (REP) is also affected. The
REP shields the retina from excess incoming light and also nourishes the visual cells.
It is thought that people with this type of dystrophy have trouble processing vitamin
A and should therefore avoid excessive amounts of vitamin A. Patients should also
avoid bright light; bright light may accelerate the progress of the disease.
Best’s Disease: A dominate form of macular dystrophy. In early stages of Best’s, a
yellow cyst forms under the RPE. A patient’s peripheral vision is usually not
affected. Eventually, the cyst may rupture causing fluid and yellow deposits to
spread throughout the macula which will cause it and the RPE to gradually die and
cause vision loss. Head injuries may make Best’s Disease worse therefore patients
should take proper precautions when riding a bike and should avoid contact sports.
Cone-Rod Dystrophy: A type of dystrophy in which the patient will first experience a
loss of central vision, followed by night blindness and peripheral vision loss. The
central vision loss will typically occur during the first decade of life. The onset of
night blindness typically occurs after age 20. Patients with this type of dystrophy are
usually light sensitive and have problems distinguishing colors. Patients may also
experience rapid involuntary eye movements, or nystagmus.
What can you do to help your child or student?
It is important to first have an understanding of the type of dystrophy that the child has and
any associated symptoms. Help make sure that the child is being seen by an ophthalmologist
regularly and that the condition is being monitored as needed. Make yourself familiar with
the child’s strengths and weaknesses as well.
Other things that can help include:
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Make sure that the lights in the classroom or home are adjusted to the level that is
comfortable for the child
Help make sure that areas are free from clutter; keep things picked up and organized
in a way that will help keep the child from tripping over something he/she couldn’t
see
Make yourself familiar with any resources and tools available for the child.
Understand that the child’s vision is being affected in various ways; be willing to
make all proper accommodations and modifications necessary for the child.
Be supportive! This will most likely be an emotional experience for the child,
especially at first. Help him or her to understand their condition as best as possible
and also educate their peers and siblings on the condition and ways that they can
help.
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Resources:
American Macular Degeneration Foundation. Stargardt Disease. 16 June 2010.
<https://www.macular.org/stargardt-disease>.
Macular Society. Your Guide to Juvenile Macular Dystrophy. Andover, 2013. Pdf.
<http://www.macularsociety.org/Resources/Macular%20Disease/Documents/PDF/How
%20We%20Help/accss%20Guide%20to%20JMD.pdf>.
Roberts, Dan. Types of Juvenile Macular Degeneration. October 2002. article.
<http://lowvision.preventblindness.org/eye-conditions/types-of-juvenile-maculardegeneration>.
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