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Student Is Dispelling Myths About Albinism

Editor's Note: The following article is reprinted from the Intelligencer, September 17, 2004.

When Christopher Hoagland was born, doctors told his mother he would never see or hear because he has albinism.

Neither is true.

Although his vision is far from 20/20, he can read with corrective lenses, and his hearing is just fine.

Albinism is an inherited condition in which most people have little or no pigment in their hair, skin or eyes. Some educators and the general public aren't always well versed on the condition.

Now, nearly 16 and a high school sophomore, Christopher hopes to change that with a public awareness campaign he has developed for his Eagle Scout project.

With the help of some of his fellow Boy Scouts, he recently mailed packets of information on albinism to eye doctors, pediatricians and school districts in Bucks and Montgomery counties and invited them to attend an information session he is hosting Saturday at Upper Moreland High School.

Speaking at the session, to which the residents also are invited, are his ophthalmologist, his vision support teacher, his orientation and mobility teacher, his mother and another student with albinism.

"I want people to be aware of what albinism is from a vision point of view, an educational point of view, a social point of view and a student's point of view," Christopher said, as he sat with his family at their dining room table, his arms sunburned from a recent marching-band practice at school.

He also wants to dispel the misconceptions people have about the condition, some of them derived from books and movies that portray people with albinism as villains.

"People stare and make comments," said Christopher's mother, Beth.

"All the time, from the time I was little," he added.

"People ask whether we dyed his hair," Beth Hoagland said.

According to the National Organization for Albinism and Hypopigmentation, a non-profit support and information group known as NOAH, albinism refers to a group of inherited conditions that affects one in 17,000 people in the United States. One form of albinism affects the hair, skin and eyes, while another affects the eyes and may affect the skin and hair only slightly or not at all. Those with the skin condition are advised to be careful about getting too much sun.

"The condition is characterized by uncorrectable low vision, typically ranging from 20/70 to 20/400," said Michael McGowan, president of NOAH's board of directors. Although many people with Albinism are legally blind, some have vision acute enough to drive a car, and most can read without braille. Some people with albinism have red-or violet-colored eyes, but most have blue eyes, while some have hazel or brown eyes.

"For the most part, there are no serious medical issues with a person with albinism," McGowan said.

The desire to teach others about albinism is not new to Christopher. He has conducted information sessions for his classmates in the past, telling them what his "low-vision" aids are and why he needs them. In addition to his glasses, Christopher uses specially enlarged textbooks for his classes and magnifying lenses to read library books.

"He's fulfilling a real need, as far as I can see," said Cynthia Curtis, Christopher's vision support teacher from the Montgomery County Intermediate Unit. "I think it's a wonderful service that he's doing for the community."

McGowan called Christopher's Scout project inspiring and gutsy because it means calling attention to himself, when what people with albinism want is to fit in with everyone else.

Jodi Spiegel Arthur can be reached at (215) 957-8148 or: jarthur@phillyBurbs.com

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