BLOOMINGTON — Becca Evans doesn’t mind standing out — as an occupational therapist, marathoner and volunteer who assists children.
The 27-year-old Bloomington woman understands that she — as a person with “very blonde hair,” fair skin, low vision and special driving glasses — already stands out.
Evans has albinism. Rather than hiding her inherited pigment disorder, she accepts it, even as she and other albinos face misconceptions and ridicule from time to time.
“She embraces it (albinism),” said Liz Halcomb, a physical therapist at Advocate BroMenn Medical Center, Normal, who has worked with Evans for three years. “She doesn’t try to hide it. She does very well with it and doesn’t let it hold her back from anything.”
“We all do what everyone else does,” Evans said. “We go to school, work, hang out with friends. We just might do some things differently and we may stand out a little more.”
The confident, attractive young woman is a far cry from movie depictions of people with albinism. When “The Da Vinci Code” was released in 2006, with the villain portrayed as an albino assassin-monk, the National Organization for Albinism and Hypopigmentation (NOAH) said the movie was the 68th film since 1960 to feature an evil albino.
“The evil albino — I have no idea where that came from,” Evans said. “I hope that’s not the only thing that people know about albinos.
“We want people to treat us just like everyone else — because we are like everyone else.”
Evans, a Bloomington native, knew at a young age that she was different. A couple times a year, her family would take her to see a pediatric ophthalmologist in Iowa City. A teacher of the visually impaired assisted her in day care.
In early elementary school, her mother would come to her classroom at the beginning of the school year so other children could look through Evans’ magnifier (which she used to read small type) and monocular (like binoculars that she used to see things at a distance, such as during school assemblies).
“My family was pretty open about it,” she said.
By the time Evans was 8 years old and her sister, Rachel, was born with albinism, Evans understood that she had the disorder and needed help with some things.
Her teachers photocopied their blackboard notes so Evans could read them. She used large print books. In physical education class, a teacher used bright-colored softballs to make it easier for Evans to see. In band, she had her own music stand and her notes were larger.
“A few times, I got called names, like Whitey and Casper,” Evans recalled. “Sometimes, if I couldn’t see the ball in P.E. or recess and missed, some kids would laugh.
“Some people with albinism get picked on a lot,” she continued. “But I had good friends and two big sisters (without albinism). I was teased but not often.
“I remember being self-conscious and getting really nervous if I had trouble seeing. But the schools here are really good,” said Evans, a 2004 Bloomington High School graduate.
At home, “Rachel and I had the same expectations, responsibilities and chores that our older sisters had,” Evans said. “Most of the time, I kind of almost forgot I had it (albinism).”
The first albinism symptom that people recognize is Evans’ fair hair and skin. “I sunburn easily,” she said. “I’ve had blistering sunburns.”
At increased risk of skin cancer, Evans wears sunscreen, hats and sunglasses, and does skin checks to make sure spots on her skin aren’t changing. When she notices changes, she tells her doctor, who has removed several spots over the years.
The second symptom that people recognize is Evans’ eyes. She has nystagmus (involuntary, horizontal back and forth movement of the eyes), photophobia (extra sensitivity to light and glare) and low vision.
For close-up work, she uses special reading glasses with magnifiers. At work, she uses larger computer screens. On her personal laptop computer, she has set it to have white text on a black background to make it easier for her to read.
She can drive but must use bioptics — glasses that have small telescopes mounted on regular lenses — to help her see further away.
Evans had eye surgery last December to slow down the nystagmus movement. “What I see is a little clearer,” she said.
Evans became an occupational therapist because she had a good experience with an occupational therapist who helped teach her to drive.
Outside of using larger computer screens and occasionally asking a co-worker to double-check handwriting on a paper chart, Evans needs no accommodations at work, Halcomb said.
“I don’t think it’s the first thing that jumps out to patients,” Halcomb said of Evans’ albinism. “These patients are pretty sick. What they first notice is here’s someone who is being patient and kind to them.
“We work with patients with a lot of disabilities. Becca can relate to them because she has problems with her own vision.
“We (therapists) have to find a way to connect with patients to get ’em to do things that they find difficult to do. You need to figure out what works with each patient and Becca is good at that.”
Occasionally, patients ask about her hair color or vision, but most don’t, Evans said. “I answer their questions and don’t make a big deal of it.”
Outside of work, Evans spends a lot of time running. “I started running in elementary school because sports with balls were harder for me.” She has completed three marathons and four half-marathons.
Because of her low vision, she is especially attentive to her surroundings. She does longer runs with friends — including Heather Heinrich of Bloomington — who warn her of obstructions such as potholes and ice.
“The biggest thing that I notice when we’re running is she has difficulty seeing faces of people running toward us,” Heinrich said. “So I’ll tell her the name so she can say ‘hi.’”
Since she was 8 years old, Evans’ family has gone every two years to a NOAH national conference. Last summer, she oversaw the children’s programming. In 2011, she volunteered at a NOAH camp for children.
In 2008, she went to Uganda and Tanzania, where a friend was in the Peace Corps. Evans spent a month doing voluntary occupational therapy with children in an orphanage and gave sunscreen and sunglasses to children with albinism.
“Becca is a sweet, outgoing person who doesn’t see herself doing anything spectacular,” Heinrich said.
“I wouldn’t change having albinism,” Evans said. “It might be nice to see better but, in some ways, it has made my life richer.”
- People with albinism have inherited altered genes that don’t make the usual amounts of the pigment called melanin. People with albinism have little to no pigment in their eyes, skin and hair.
- One in 17,000 people in the United States has albinism.
- Albinism affects people of all races. Children with albinism commonly are born to parents who have normal hair and eye color for their ethnic background.
- A common myth is people with albinism have red eyes. Actually, there are different types of albinism and the amount of pigment in the eyes varies. Some people with albinism have reddish or violet eyes but some have blue, hazel or brown eyes.
- People with albinism have vision problems resulting from abnormal development of the retina and abnormal patterns of nerve connections between the eye and brain. Vision problems may include far-sightedness or near-sightedness; nystagmus (involuntary, horizontal back-and-forth movement of the eye); strabismus, which results in crossed eyes or lazy eye; and photophobia (sensitivity to bright light and glare). For the most part, treatment is visual rehabilitation, optical aids and bioptics.
- People with albinism have fair hair and skin so wearing sunscreen, hats and sun-protective clothing is important to reduce the risk of sunburn.
- In the United States, people with albinism live a normal life span. In tropical countries where skin protection isn’t used, life-threatening skin cancers are more common.
- People with albinism risk social isolation, misconceptions and may face questions of their race and paternity. Families and schools should include people with albinism in activities.
SOURCE: National Organization for Albinism and Hypopigmentation (NOAH)
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