Diagnosis of albinism worries parents: children suffer skin sensitivity and poor eyesight. Academics say the condition makes people pushy, too. Dorothy Lepkowska reports.
When Joseph Hopper (above) was born, it was not his blond hair and bright blue eyes that puzzled his parents, even though they are both dark-haired.
They were more concerned that he did not appear to be focusing visually on what was happening around him.
"He was about seven weeks old when we noticed something wasn't quite right," says his father, Andrew Hopper.
"We wondered about the hair but dismissed it because a lot of babies are born blond. It was his sight that really concerned us."
Mr Hopper, 34, and his wife Sarah, 31, from Chatham in Kent, took their infant to a specialist who suggested that their child might have albinism.
"We knew nothing about it and the doctors couldn't tell us much," says Mr Hopper, "so I checked it out on the internet. In the end we were fairly sure that was the problem, but we wanted it medically confirmed."
Joseph, now 6, was diagnosed with oculocutaneous albinism, which means he lacks skin and hair pigmentation, has blue eyes and is visually impaired.
Recently, he was also diagnosed with autism, but this is not an effect of the condition.
An estimated one in 17,000 Britons has albinism to some degree, although some figures suggest it is closer to one in 30,000. Added to the physical appearance, sufferers are sensitive to light, and need to protect their skin from sunlight.
The condition occurs when both parents are carriers of the gene that causes it, even though they may themselves show no symptoms. The Hoppers are having another child, and there is a one in four chance that Joseph's new sibling will also be born with it.
Aside from visual impairments, children with albinism tend not to any have other learning impediments. Most are educated in mainstream schools.
However, studies have shown they may have certain traits which affect their learning and interaction with other pupils. Carolyn Palmer, senior lecturer in education at Flinders university in Adelaide, South Australia, has carried out extensive research into visually impaired learners - especially those with albinism.
Her study of the social competence, cognition and peer relationships of 10 Australian children aged eight to 16, presented to a conference of special-needs experts in Glagow in August, came up with some interesting findings.
Dr Palmer found that children with albinism were friendly, outgoing and tended to mix well. However, they were often described by both parents and teachers as pushy and overbearing. They sometimes found it difficult to join in with a group because they would "just barge in" and try to take over.
"While (they) clearly participate in groups, their tendency to boss other group members and display bombastic behaviour come out strongly," says Dr Palmer.
"The findings show that (they) are a unique and diverse group of individuals who, by the very nature of their condition, have significant social consequences to deal with.
"Added to this, the very random, low-incidence type of (their) problems make them more noticeable and they are usually isolated from others with the same disability. Thus they have little opportunity to share experiences and benefit from those of others."
She added: "Emotionally they also need to deal with attitudes of others, the difference in their appearance and the difficulties of living in an often ignorant and discriminatory society."
Mr Hopper believes teachers should be aware of the needs of pupils with albinism without drawing attention to them.
"Asking the whole class if they can see the board is a good way of not singling out the child with a visual impairment," he says. "Hopefully that child will speak out and say they need to sit closer to the front. In every other way they should be treated like any other child. I know of children with albinism who have grown up to gain first-class honours at university.
With the right help, there is nothing they cannot do."
Joseph Hopper's website: www.stumm.co.ukjoseph
ALBINISM: THE FACTS
* The condition is an autosomal recessive condition passed on from parents.
* Those born with oculocutaneous albinism, the most common type, are sensitive to bright light, have pale eyes and little or no hair or skin pigmentation.
* Estimates of the number of people with the condition in this country range from one in 17,000 to one in 30,000.
* People with ocular albinism will have visual impairment but some pigmentation.
* The condition affects people of every race: black people are just as likely to be born with it as white people.
* Nystagmus, the involuntary movement of the eyes, is common in people with albinism, as is strabismus, or squinting.
* Hermansky Pudlak Syndrome (HPS) is a rare type of albinism which involves complications such as bruising easily, bleeding and respiratory disorders.
For more information on albinism go to: www.albinism.org.ukResources for teaching: www.kidshealth.orgkidhealth_problemsskinalbinism.html
'ARE THEY LAUGHING AT ME? IT'S EASY TO BE PARANOID'
Ian Moore has had his nose broken and been verbally abused in the streets because of his appearance. The 29-year-old teacher has albinism, and spent most of his early education in a school for visually impaired children.
That protected him from bullying and name-calling, at least until adulthood.
"When I was a sixth-former I was beaten up once in the street. I try not to be paranoid about being abused. Sometimes you hear people laughing and your immediate thought might be that they're laughing at you. But I'm more philosophical about it now. It's easy to be paranoid," he says.
Mr Moore, a senior teacher, has not allowed his disability to prevent him from pursuing his career. He is an advanced skills teacher at Thameside primary, in Abingdon, Oxfordshire. On the advice of colleagues, he is applying for the National Professional Qualification for Headship , after seven years in the job.
"I'll do it more to support my new position as senior teacher than due to any immediate urge to become a head," he says. "Classroom teaching is my main passion, but I do enjoy responsibilities across the whole school."
Mr Moore did a degree in chemistry and chose to teach as a career because he felt it was worthwhile. Although his fair hair and skin attract some attention from pupils and parents, he explains his condition to them to help them understand.
"Before I started my job, I was given a sort of risk assessment by the occupational health people. No one voiced any concerns that it would be a problem working in a school," he says.
"In fact, every school I've ever been in has been supportive. There seem to have been more reservations about me being a male in an infant school than about having a physical disability.
"Sometimes children point out I have white hair. I tell them they have brown hair. We discuss how and why people might be different. I hope that having been taught by someone like me will help pupils grow up to be understanding, knowledgeable and tolerant of people who are not necessarily like them."