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The dark side of living with albinism

Local poet living with albinism opens up about the issues he is confronted with daily

Growing up with albinism, especially in a rural community, is difficult due to discrimination, stigmatisation, and others mocking you.

Yet Boitumelo Tevin Gaddafi The Poet Manganya overcame all these challenges and the challenges associated with albinism to become a passionate and successful poet.

“The problem with albinism, especially in rural communities, is the lack of knowledge and information. Although I received immeasurable support from my family and friends, society still gave me the cold shoulder. It was mainly because society doesn’t know that a person with albinism is still a person the same as the rest and thus they do not know how to treat you. For example, my peers at school couldn’t understand that I was shortsighted and thus had to sit at the front of the classroom. Another problem I encountered was affording sunscreen to protect my sensitive skin from the sun.”

Boitumelo says he only truly came to understand albinism when he attended Siloe School for the Blind, a primary school for people living with albinism and those living without the gift of sight.

Here he had a complete mindset change and he started taking better care of himself.

“I moved to Pretoria where I enrolled in Filadelfia Secondary School. Here my perspective changed even more about how other see people with albinism, this also changed how I perceive myself. I acknowledged the boarding school environment I was exposed to was small and I had to prepare myself to face a bigger environment at university. Even though I had matured a lot over the years and learned to accept myself, I was still afraid of how I would be received by the other students,” he added.

“However, I swept away my fears and stood firm for what I believed in. I decided not to allow people to define who I was by my appearance. In fact, I would approach people who seemed not to understand what albinism was and explained it to them, informing them how to treat people living with albinism. I came to the realisation that how I treat myself determined how others would treat me. For instance, I pitied myself and only chose to socialise with others living with albinism, thus distancing myself even more from society. Because I pitied myself I in a way expected others to pity my, however, I changed this by changing my mindset.”

His advice to others living with albinism is that they need to realise the world doesn’t owe them anything and neither do they owe anyone an explanation for the way they look. With accepting yourself, others will come to accept you as well.

“We are powerful beyond measure. We possess the skills to be great people, we have much to offer to the world, we just need to unleash our potential and share our talents with the world,” he said.

His advice to those in society who shame people living with albinism or any other disability is to not feed their ignorance with discrimination but rather to educate themselves so they can learn how to accept them for who they are instead of their appearance.

source;http://reviewonline.co.za

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10 Dangerous Myths About Albinism, and the Truths Behind Them

Albinism is one of the least understood conditions around the world, and it doesn’t help that popular culture persists in perpetuating many myths.

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Myths that are simply false.

These myths have existed throughout history and continue to negatively affect the lives of many people with albinism (PWA), even to this day.

In some cases, these myths are actually endangering lives, particularly in parts of Africa where ritualized violence against PWA is on the rise.

Here are 10 of the most common myths surrounding albinism, and the truths behind them:

1. Albinism is contagious. Albinism is a genetic condition passed on by both parents. Each parent must be a carrier, and both must pass on an albinism gene for someone to be born with the condition. It cannot be caught and is not contagious.

2. Albinism is a curse or a punishment. Albinism is a genetic condition that results in a lack or total absence of melanin (pigmentation) in the body. It is not a
curse or a punishment for past wrongs. It is purely an autosomal-recessive genetic condition that affects around 1 in 20,000 people in North America and Europe.

3. PWA are less intelligent. Albinism does not have an impact on a person’s
intelligence. Albinism merely affects the level of melanin in the body. It has nothing to do with the brain, and most people with albinism have average levels of intelligence. However, due to the lack of melanin present in the development of the eyes, most people with albinism suffer from significant vision impairment which can affect learning and education outcomes.

4. PWA have red eyes. PWA actually have eyes that range from blue through to brown. However, the lack of melanin that characterizes the condition means light is not absorbed by the eyes and is instead reflected back out, which sometimes leads to a reddish glow in certain lighting conditions.

5. PWA all have white skin and hair. Not all PWA are entirely white. PWA from an African background can instead have yellow or orange hair and can also have some level of skin pigmentation. There are many types of albinism too, some of which are characterized by reduced melanin, rather than a complete lack of it. In these cases, PWA will appear to have some pigmentation and will therefore not have the stereotypical white skin and hair.

6. PWA are evil. This is a myth perpetuated by society and reinforced by Hollywood. Albinism is, for some, a confronting condition. Anything to do with visible difference is invariably met with distrust. Throughout history, most PWA have been
stigmatized, demonized and ostracized, all because of how they look. Apart from lacking pigmentation and having a vision impairment, PWA are exactly the same as everyone else. And just like everyone else, they are not born inherently evil.

7. PWA can cure HIV and their body parts possess magical properties. In
2000-2013 the UN Human Rights Office received more than 200 reports of killings and dismembering of people with albinism for ritual purposes in 15 countries. It is also commonly believed in parts of Africa that having sex with someone with albinism can cure HIV. This is not true and has led to violent rapes and rising HIV infection rates in the albinism community. PWA do not possess magical properties nor the power to cure disease.

8. Albinism only affects appearance. Melanin is integral to developing skin, hair
and eye color, however it is also vital for the development of healthy vision. PWA often suffer from significant vision loss due to the lack of melanin present during the development of the eyes in the womb. Together with reduced visual acuity, albinism is also characterized by rapid, involuntary movement of the eyes (nystagmus), difficulty dealing with glare (photophobia) and problems with distance vision and depth perception.

9. PWA cannot go outside during the day. PWA can go outside at any time but need to take extra precautions when out in the sun. Protective clothing, sunscreen and a hat are required all year round to minimize the risk of skin damage from the sun.

10. PWA are the result of the mixture of two races. PWA are the result of genetics, pure and simple. The rates of albinism in Africa, in particular, are higher than elsewhere partly due to a long held culture of intermarriage. So the greater prevalence of albinism is due to a limited gene pool; it’s not the result of the mixture of two races.

It seems to be a sad fact of life that those who look different will always be treated differently. The history of albinism and of PWA, even now, confirms this. Hopefully learning a little more about the condition will help people better understand it and hopefully lead to greater acceptance by society.

source;http://themighty.com

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People Of Color With Albinism Ask: Where Do I Belong?

Growing up, Natalie Devora always questioned how she fit into her African-American family.

“Everyone was brown, and then there was me,” Devora says. “I’m a white-skinned black woman. That’s how I navigate through the world. That’s how I identify.”

Devora has albinism, a rare genetic expression that leads to little or no melanin production. No matter what race or ethnicity someone with albinism is, their skin and hair appear white because of a lack of pigment. It is estimated that one out of every 18,000 to 20,000 people born in America each year has some form of albinism,according to the National Organization for Albinism and Hypopigmentation.

Devora grew up in Oakland, Calif., where, every so often, strangers would ask her mother about her “white” child. It made Devora question where she belonged.

“If we were out doing something as simple as buying shoes, it would be, ‘Whose child is that?’ ‘Are you baby-sitting that child?’ ” Devora recalls. “My older brother would joke, ‘Someone left you on the doorstep and rang the doorbell and left.’ ”

Natalie Devora sits with her daughter, Jewel Devora.

Courtesy of Natalie Devora

As an adult, Devora felt ostracized when she attended a meeting for female writers of color at a bookstore in Oakland. One of the other writers wrote and read aloud a piece about how the meeting was a “black only space.” Devora felt it was directed at her and almost left. Instead, she wrote a piece of her own in response. “It touched on how my life had been a war of colors,” Devora says, and on how she struggles with being “both a black woman and a black woman without pigment.”

That deep, internal struggle felt by many with albinism often goes unnoticed by others. Because they often don’t look like the people within their racial group, the question is: Where do they fit?

“Unfortunately, society has some problems with difference,” says Mike McGowan, the president of the National Organization for Albinism and Hypopigmentation, or NOAH. “It can manifest itself to a child in terms of teasing and being shunned. It can manifest itself within the family, where family members or parents may feel that they have been cursed or have difficulty dealing with a child who is different or looks different.”

It helps when people with albinism have a chance to get together and talk, says McGowan. That’s what NOAH does. It was founded in 1982 in Philadelphia, and its roughly 1,000 members meet at local chapters in places as diverse as the San Francisco Bay Area, northern Illinois and south Texas. NOAH holds annual conferences, picnics and fundraising bowl-a-thons nationwide for adults and children with albinism.

“There’s almost a familiar connection that happens even though we’re not related by blood,” McGowan says. “The condition gives us a common experience worth sharing.”

There is little written about dealing with albinism or its psychological effects. In popular culture, albinism is often depicted negatively in a slew of books, movies and television shows, from the assassins in The DaVinci Code and The Matrix Reloaded to the evil “Albino” character in The Princess Bride hellbent on torture. The word “albino” is also deemed as derogatory by many in the albinism community, though it is often used in popular culture. Many members of the community prefer to be referred to as people with albinism.

Natalie and Jewel Devora

So what’s behind the villainous references and negative treatment of people with albinism? A lack of understanding of the disorder, says Dr. Murray Brilliant,director of the center for human genetics at the Marshfield Clinic in Wisconsin. At the center, Brilliant conducts research on genes that influence human health disorders.

“Human beings define race as an important factor in identity,” Brilliant says. “It’s very important for people to have a group identity and albinism can complicate things.”

People with albinism have at times been revered around the world, but sometimes with some disastrous consequences. In 2012, NPR reported on East Africans with albinism in Tanzania being hunted for their body parts because they were considered auspicious. An organization called Under the Same Sun strives to protect Tanzanians with albinism. According to the 2011 Aljazeera documentary Spell of the Albino, these killings have gone down in part thanks to the media attention.

That brings us back to the original question. In a society where race is intrinsic to the fabric of our society — leaving aside the myths of post-racialism and colorblind politics — where do people of color, but without color, fit? Do they need to fit? And how should everyone else change their own perceptions about albinism?

Natalie Devora’s daughter, Jewel, is also African-American, and has a dark skin tone. Jewel, 20, who is adopted, says she was upset when she learned about how her mom has struggled with her identity over the years. “Color does matter, unfortunately,” says Jewel. “People with albinism are in the middle of it because everyone around them is asking them what color they are and where they fit in.”

At the same time, Devora points out, African-American people with albinism have some privileges that others, like her daughter, do not. Having white skin can affect how they’re treated anywhere from job interviews to police encounters to their own homes. “Even though someone may know that I am black as they are, there is still an assumption that I’m white,” she says. “Or that my blackness is not the same as theirs based on my skin color. Which means I would have access to greater privilege. Which honestly, in some cases, is true.”

Natalie Devora with her daughter, Jewel Devora, as a baby.

The Devoras point to the experience of shopping for clothes together. Natalie says she often notices salespeople keeping an eye on Jewel, but not on herself or other white-skinned people in the store. “My responsibility as her parent and just as a person in the world is to call attention to that, like, ‘So, why are you following my daughter around?’ “

Brandi Green, 33, is another African-American woman with albinism. She lives in Chicago and is an associate with Teach for America. She didn’t find NOAH until she was a young adult and says it would have helped to know about it as a kid since neither she nor her parents, who were also African-American, understood her condition.

“People at school would just be like, ‘You’re an albino.’ And I’d be like ‘I’m fair,’ because I didn’t know at the time,” Green says. “My parents hadn’t told me, so I didn’t take it as truth.” She recalls her parents’ explanations for her color: ‘Oh, we had white people in our family a long time ago,’ or, ‘You just take after some lighter people in our family.’ ”

As a result, Green says she would overcompensate to try and prove she was African-American, which didn’t feel right, either.

Her mother also struggled with questions from strangers about her daughter’s looks. “I think she didn’t really want to acknowledge any kind of difference,” Green says. “She’d tell me, ‘You’re just like everybody else.'” But over time, she felt more and more that albinism was a huge part of her identity.

Green was a student at Grinnell College in Iowa when she first learned about NOAH. An older African-American woman on the staff of her college — who also had albinism — invited Green to a local event hosted by the organization. For the first time, Green was able to talk about how she had been treated in the past. She remembers trading stories with people she met that day. “‘Oh wait, you were teased, too? Oh wait, I was teased!'” Green recalls, laughing. “‘They called you Casper?’ You know, just kind of talking about that.”

After seeing NOAH’s positive impact on Green, her dad supported his daughter’s involvement with the organization. That support has also helped Green embrace her identity, long after her parents died. “I grew up feeling really alone based on my difference and experiences,” Green says. Now, she says, she’s comfortable in her own skin, and helping others with this condition. “I’m very open about discussing it, very open about educating others.”

source;http://www.npr.org/

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Witchdoctor says their body parts bring “Luck”, Now they are hunted down like animals to be sold albanism

Their Condition

In Tanzania, Albinism isn’t just a hereditary condition in the skin, but also a part of a potion making. Because of the belief of the witch doctors, that their body parts may bring wealth or luck to a person, they are now being hunt down and from then, their body parts become in demand amounting to a lot of money. The so-called-hunters are mutilating the albinos, murdering them and getting their whole body which costs 50,000 pounds. These hunting of the albinos is now on and their safety in this world is very little.

The Victims

These harmless albinos are now shouting for their rights. Even in their family, these albinos aren’t safe. There are several reports that even their spouses or relatives are chopping off their albino relative’s limbs off, which is a bad thing and alarming case that are being reported to the United Nations. Money is the main reason for them, if it isn’t for the money costing their body, they wouldn’t be mutilated and be murdered. It’s really depressing that even the parents of these albinos are behind these attack on them.

Naive Albinos

This girl is one of those whose arm is amputated on the attack in Tanzania, she is just one of the albinos that is hiding and now seeking for protection for their government that seems so ignorant about their condition in the country. Nearing the election in their country, these politicians want luck and so much wealth in their life, so these albinos are hiding in their homes. It is frightening for them to be once more abducted and lose one of their body part in exchange of selfless reason.

Who are behind these hunt?

It is for the purpose of being wealthy and to have a good luck in their life. Albinos didn’t want to chopped down helplessly. An albino activist is on the process of tracking down who would like to hunt them down, or who is behind these hunt? Witch doctors said that those who are buying the potions are mostly wealthy and successful. Some says that there are the politicians who want to be lucky on their career and on elections. Whoever is on this hunt, it should stop believing on this belief because it’s not true.

Where are these survivors now?

These albinos are now kept in an establishment with secured walls and railings to be secured with the men who are hunting them down. Because of the unexpected increase of the murdered albinos, they are secured and often isolated among other people in Tanzania just like prisoners. Some of them want their rights but they can’t be free now because of their danger in the society. Albino children are suppressed by their freedom, since they are hidden in these establishments and being deprived of the education which are unjust for them.

Shouting for their right

Mostly in the camps, Albinos want to live in the community just like other people. As a human being, they do have rights that they should be experiencing but because there are some reports that they are still being hunted and some witch doctors eagerly want them to be chopped down and be paid by these customers of theirs who offered a lot of money once these potions has been completed. Some of them want to be educated and live just like other people, the government hasn’t yet provided solutions for these albino killings but they are securing these albino people and tracking down through the witch doctors who are behind this hunt. The Tanzanian government didn’t want to jump into conclusions and arrest these witch doctors unless they have sufficient evidence to support this case

Making it clear

One of the albinos are spreading the word to the people in the community to explain that these belief isn’t true. They’re just human beings just like others and there’s no luck in their body parts, it just they have this genetic condition that is rare and hereditary. It is unjust to hunt them down and do inhumane things unto them. They are not animals and their body parts shouldn’t be also chopped off and added to a certain potion that is false. Because of their condition, they are isolated now which they shouldn’t be experiencing, they should have their own rights also just like other races.

Their Condition

Because of this superstitious belief that they are believing until the 20th century, children are not only suffering from the albinism disease, but also they suffer from the frightening search and hunt for their body parts. Like prisoners in a cell is what you can describe to these albino people that are being closed in an area and kept away from the hunters that are still continuously hunting them. Though the United Nations are raising awareness to these albinos, the reports on killing them are still high and continue to increase. But mostly, the children have higher demands since they are naive and innocent, a sign that they are perfectly fit for the witchcraft potion.

In the future

Because of the hunt of the albinos, it is now feared that these albinos were to be extinct and would eventually disappear if this hunt continues. Awareness and raising the albino’s rights is what they are needing right now. A support group that would serve their needs physically and emotionally. Family should be also on their side at most times and shouldn’t join the hunt in killing them.

source;http://trendingpost.net/

 

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How nature and human have ganged up against albinos

Factors of weather such as sunshine pose a great danger to albinos, just like their human neighbours have threatened their existence.

Recently, there were several demonstrations in Malawi by people with albinism protesting numerous killings of their colleagues

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In addition to the demonstrations, Amnesty International also released a report blaming the Malawian police for failing to tackle a scourge fuelled by ritual practices.

The report reveals that at least 18 people with albinism have been killed across Malawi since November2014 in ‘unprecedented wave of brutal attacks”.

The report titled “We are not animals to be hunted or sold” painted a chilling picture of killings and fear, with the body parts of victims, including children, routinely hacked for use in witchcraft.

Just like in Malawi, the situation is also very common in countries such as Tanzania and Mozambique. They are not only slaughtered, their bodies are also exhumed when buried and this is because some people believe their body parts have charms and magical potions that bring wealth and good luck.

However, this is not the only problem they face, as the world celebrates International-albinism awareness day today experts speak out on other dangers albinos are exposed to in their daily lives.

What is albinism?

Dr. Edwig Nagabirwa, a skin specialist at Rita Health Care Services, Wandegeya in Kampala, says albinism is a genetic condition in which people born with albinism (albinos) lack melanin in their bodies. Melanin is a pigment that is responsible for producing or giving skin, eyes and hair colour. Although it is easy to identify black African albinos because of their skin is white without melanin, the condition affects people of all races.

The condition is characterised by reduced or absent melanin and because bodies of albinos are not able to make a normal amount of melanin, this explains why most of them have pale skin, hair or eyes. However, albinism does not affect their intelligence or their ability to perform other duties like any other human being.

Albinism is caused by a mutation in one of the several genes; each of the genes provides instructions for making one of several proteins involved in the production of melanin. Melanin is produced by cells known as melanocytes, which are found in one’s skin and eyes and a mutation in any of the genes may result in no melanin at all or a significant decline in the amount produced.

She says parents who give birth to children with albinism appear normal in terms of appearance with normal skin, hair and eye colour, but have genes both the normal and abnormal genes with albinism.

“Albinism is passed from parents to their children through genes, and both parents must carry an albinism gene to have a child with the condition.  A couple with albinism genes will have quarter of their children born with the condition, although the other children may be normal,” she said.

The most at risk children to be born with albinism are those whose both parents carry the genes. This means each child has a 1 in 4 chance of having albinism. But if only one or neither of the parents is a carrier, then each child has lower chances for albinism.

People from a lineage with albinism have a 25% chance of being born with the condition if both parents are carriers of albinism.

Types of albinism

Dr. Edward Ogwang, skin specialist at Skin Specialist Clinic, Bombo Road says there are two categories of albinism.

The Ocular albinism type, which has three sub-types. Here, the person has normal skin, but it is the eyes that are affected. There is a reduction in the colouring ((pigmentation) of the iris, the coloured part of the eye and the retina, which is the light-sensitive tissue at the back of the eye. He says this disturbs sight.

He explains that the eyes are affected because melanin is involved in the process of development of pathways for sight/vision and that is why they cannot see properly. They have repetitive, uncontrolled and abnormal movement of the eyes known as Nystagmus.

“Without pigment, there is improper development of the eye, leading to poor vision, improper connection of the nerves and this explains why there is fear of the sunlight and they cannot see well in the broad day light,” he says

The other is Oculocutaneous albinism (OCA). This affects the eyes, skin and hair and it has over 10 subtypes. It is the commonest in sub-Saharan Africa. Here, there is mutation in the genes, affecting the process of melanin.

Myths about people with albinism

The condition is still profoundly misunderstood socially and medically. People associate albinism with strange beliefs and myths influenced by superstition, which foster their marginalisation, social discrimination and stigma.

Some of the misconceptions about people with albinism include:

  • Their body parts are sacred tools one can use to obtain wealth
  • people believe it is a punishment from God to produce children with albinism
  • ·People believe that albinos do not die a natural death, they simply disappear, but the truth it, they die just like any other human being.

Other people believe that women who produce albinos laughed at an albino when she was expecting, while others believe the ancestors were angry with the mother when she was pregnant.

Life expectancy

Dr. Nagabirwa says the majorities of the people with albinism have normal life expectancy, live up to their 50s if they do not get skin cancers. But even when they get the cancer and it is detected early, they get treatment and heal. Albinos can also live productive lives.

“All these misconceptions about people with albinism are wrong. Those who have become rich have worked hard or inherited their parents/relatives riches, not because they killed an albino,” she said.

On the other hand, Ogwang says the birth of a child with albinism has long term effects on a mother and child, mostly psychological effects and more so, depression.

He says most mothers of children with albinism are unhappy and reluctant to have close contact with their children, because they are in denial and this can lead to delayed milestones in a child’s development and life.

Skin cancers

Due to lack of melanin, most of them have rough skins with blackish spots, resulting from sun burns, rough spots on the lower lip (medically known as actnic cheilitis), skin lesions mostly induced by the sun and premature skin ageing, which damages the collagens and the skin begins to sag, especially at the back of the neck.

They also have visual problems characterized by crossed eyes, sensitive to light, impaired vision or blindness, involuntary rapid eye movement and premature skin ageing.

Dr. Ogwang says skin cancers are a major risk associated with albinism and is one of the major causes of death among albinos in Africa, especially if the cancers are not diagnosed and treated early.

They are at a higher than average risk of skin cancer because their skin has no natural protection against the sun, making them very sensitive to ultra-violet radiation, which predisposes them to skin cancers.

Some of the cancers that affect them include basal cell carcinoma, melanoma, keroto acenoma and squamous cell carcinoma which is the commonest form of cancer. This type of cancer is characterized by uncontrolled growth of abnormal cells arising in the squamous cells, which compose most of the skin’s upper layers (the epidermis).

“With this cancer, the person with albinism gets scaly red patches, open sores, or warts which may crush or bleed,” he says.

He says to prevent the cancers, they need to avoid direct contact with the sun, especially one between 11: 00am to 4: 00pm because it is very sharp and can affect them.

Ogwang says there is no cure for albinism, adding that treatment can only relieve symptoms and prevent damage. He says prevention of extreme dangers includes wearing protective clothing such as long-sleeved shirts, and trousers for men, and long sleeved blouses, dresses and skirts for women.

“They also need sunglasses to protect their eyes from the rays, shades to protect their eyes from the sun, and hats to prevent direct sun rays on their heads.  The best prevention mechanism is to stay away from the hot and sharp sun,” he advises.

He, however, says in our setting, people with albinism do not thrive well. This is because they are not financially stable and accessing treatment is not easy. For instance, a bottle of sun screens costs sh65, 000 to sh70, 000, which most of them cannot afford.

Treatment on albinos

When an albino has got a cancer on their skin, different interventions are done to get rid of it, there is use of nitrogen to freeze out the cancers, use of some medications to cut out the cancers.

Surgery

Ogwang says sometimes surgery depends on the location of the cancer on the skin and the part of the body.

The procedure involves removal of skin and examining it. “Removing an small tumour costs about sh400,000, while big tumours require surgery known as mohis surgery, which goes for about sh20m. The early detection and prevention of the formation of the tumours, the better,” says Ogwang.

“People with albinism need a lot of routine skin checkups, especially if there is a lot of exposure to the sun. A person can go for checkups at least three times a year, but if an albino notices any form of lesion, he or she has to go for checkup as soon as possible, because this could be the beginning of skin cancer if ignored,” he advises.

When going into marriage, it is also important for the couple to test and ensure both of them do not have the genes, and marriages between people from the same clan, villages and communities are not encouraged, because albinism is common among communities that marry from each other.

Statistics

Though there are no readily available statistics in Uganda or exact figures on how many people are born with albinism in Uganda, but few studies that have been done worldwide indicate that 1/4000 people in Sub-Saharan Africa has albinism.1 for every 20,000 people worldwide has albinism

source;http://www.newvision.co.ug/

 

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The benefits of bioptics for individuals with Albinism and Stargardt’s Disease

Bioptics can provide lifelong benefits for those born with visual impairments.

Albino woman wearing bioptics and working at a computer

Individuals who are born with a visual impairment such as Albinism or who develop it in their younger years such as Stargardt’s Disease are disadvantaged in their ability to maximize their academic, occupational and social lives.

Distance vision is our SOCIAL SENSE. We use it to make eye contact, read body language, and to interact with the world around us.

While reading may be the first issue that visually impaired individuals will notice, it is not the only factor that will impact their lives, their personal potential, and even their happiness.

Reduced distance vision reduces one’s independence and confines individuals both in their geographic area but also in their ability to increase their personal and economic opportunities.

people socializing

How can bioptic telescopes help?

A low vision telescope magnifies the retinal image making things more visible and can provide near-normal visual acuity. When the telescope is attached to the top of eyeglasses, called a bioptic, the user can quickly, easily and conveniently alternate their vision between their normal vision and that of the telescope, providing sharp vision when they need it.


source;/www.ocutech.com

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Salt Causing Dark Spots On Albinos! Myth or Fact?

The 13th of June every year is the day set aside as the World Albinism Day in order to help fight the myth and wrong perceptions generally projected by those who do not have it against Albinos. Albinism is a congenital disorder (Birth disorder) which come to be due to lack of melanin in the skin, eyes and hair. Those with no melanin are called Albinos while those with little melanin are called albinoids. This is usually due to genetic interpretation in the body of parents of an albino. While this is the main cause of the condition, a lot of people give different assumptions. Some of them include; The parents of Albinos had intercourse in the hot afternoon, the child belongs to another father or the child is a representation of a certain god on earth. I cannot laugh enough.

Many Nigerians, even the older generation have regularly said to mothers of Albinos to avoid giving their Albino children salt or foods containing salt because it causes the proliferation of dark spots all over the skin of Albinos. Is this the reality or one of those myths that is used to stigmatize people living with albinism?

salt

As I pondered about this, I began to search, and I realised that there seem not to exist any fact on this claim. It was then I went further to consult with a few Albinos and their parents. All of them have this to say; Salt has nothing to do with the dark spot on the faces of Albino, I have included salt in the diet of my child since she was born without caution on the acceptable level as she ate same food with her siblings yet she is evenly coloured without dark spots. The reason for the dark spot is exposure to sunlight which causes sun burn. They emphasised that they did well to protect their children and self from excessive exposure to sunlight in order to have a non dark spotted skin.

While the afforementioned remains the opinion of Albinos and parents, I have also taken a stand to agree with their claims. If you avoid to add salt to the food of your Albino child, do not  forget a significant level of sodium is found in all our foods. The last reason that made me completely concur with this opinion was when I heard an Albino speak of his dark spotted skin on a radio show. He insisted that right from childhood her mum had avoided adding table salt yet he is dark spotted. He also said he had been exposed to sunlight when he was younger as he was always playing with other kids in the hot afternoon.

Let your Albino children maximise food options like other kids. Chocolates, biscuits, crackers, sharwama and other snacks contain a reasonable amount of salt and children regardless of their skin type, race and age would always love to have a bite. As your child grows up, you do not want them to develop a condition of hypotension due to low level of sodium which can be very dangerous. I am not saying you should include salt without caution into their diets. Moderation does it.

Although, no scientific fact has explained if salt contributes to this or not but clearly from consultations it shows that it might just be a myth.

If you are an Albino or you know anyone who is an Albino or you are a parent of an Albino, please we would like you to share your opinions to help educate others.

Image result for albinism diet

source;http://www.foodsng.com/

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New research unlocks a mystery of albinism

Newly published research provides the first demonstration of how a genetic mutation associated with a common form of albinism leads to the lack of melanin pigments that characterizes the condition.

About 1 in 40,000 people worldwide have type 2 oculocutaneous albinism, which has symptoms of unsually light hair and skin coloration, vision problems, and reduced protection from sunlight-related skin or eye cancers. Scientists have known for about 20 years that the condition is linked to mutations in the gene that produces the OCA2 protein, but they hadn’t yet understood how the mutations lead to a melanin deficit.

In the new research a team led by Brown University biologists Nicholas Bellono and Elena Oancea shows that the protein is necessary for the proper functioning of an ion channel on the melanosome organelle, the little structure in a cell where melanin is made and stored. The ion channel is like a gate that lets electrically charged chloride molecules flow into and out of the melanosome. When the melanosome lacks OCA2 or contains OCA2 with an albinism-associated mutation, the researchers found, the chloride flow doesn’t occur and the melanosome fails to produce melanin, possibly because its acidity remains too high.

The discovery could inspire new ideas for treating albinism, said Elena Oancea, assistant professor of medical science and senior author of the paper published in the journal eLife.

“From a therapeutic point of view, we now have a channel that’s a possible drug target,” she said. Another potential treatment suggested by the research could be to alter melanosome acidity to make up for the lack of the protein.

A biology discovery

More generally, the study is also significant for being the first to show that ion channels are important for melanosomes to function properly. This wasn’t known before because melanosomes are generally too small for their electrical properties to be measured with the the technique of “patch clamping.” Such electrical readings are how biologists discover the comings and goings — the currents — of ions in cells, which is a fundamental process in cell physiology.

“I think it is a big step forward because not only did we make progress in understanding the function of one protein important in pigmentation, but we kind of opened up a new way to study how the melanosome operates,” said Bellono, a graduate student and the paper’s lead author. “There hasn’t been much research on ion channels in the melanosome.”

Because melanosomes are so small, Oancea and Bellono had to begin their study of the OCA2 protein and its mutant forms in organelle cousins of the melanosome, such as the endolysosome, because those can be made large enough for patch clamping. In experiments where they made endolysosomes express OCA2, for example, they measured currents related to the passing of chloride ions. That provided their first key evidence that the protein was associated with an ion channel.

They also used endolysosomes to find that that the OCA2 mutation V443I specifically affects the ion channel. That mutation decreased the chloride ion current by 85 percent compared to normal versions of the protein.

In another experiment Oancea and Bellono showed that expression of normal OCA2 in the endolysosomes, which are acidic organelles, reduced acidity to above 6 on the pH scale, which is required in a melanosome for the protein tyrosinase to trigger melanin production.

Into the melanosome

But to truly understand the role of OCA2 and the V443I mutation in albinism, the researchers needed to look directly at melanosomes. They were able to turn to helpful colleagues. Co-author Michael Marks at the University of Pennsylvania introduced them to a line of mutant mouse skin cells that had unusually large melanosomes. Anita Zimmerman, professor of medical science who works down the hall at Brown University, tipped them off that bullfrogs happen to have especially large melanosomes in their retinas.

Patch clamp experiments with those large melanosomes confirmed the role of the V443I mutation in the failure of chloride ion channels. First, they compared chloride currents in normal melanosomes and ones in which they used interference RNA (a method of blocking gene expression) targeted to prevent OCA2 production. They found that the melanosomes without OCA2 produced much less current and much less melanin. Then they added either normal OCA2 or OCA2 with the V443I mutant, and they found that only the normal OCA2 protein could restore current and melanin production.

They did another experiment to ensure that melanin itself wasn’t responsible for the chloride current. It wasn’t.

Many details of the OCA2 protein’s role in the melanosome’s ion channels are still not known, the authors said, but the research points to the key mechanism that breaks down when it fails.

“OCA2 activity modulates the melanin content of melanosomes, most likely by regulating organellar pH,” they wrote in eLife. “We propose that OCA2 contributes to a novel melanosome-specific anion current that modulates melanosomal pH for optimal tyrosinase activity required for melanogenesis.”

Source:http://www.sciencedaily.com

The above post is reprinted from materials provided by Brown University.

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Recognising signs as a first time special needs parent(albinism)

As a first time parent I knew all about milestones. I didn’t know much else about parenting but after reading pregnancy and baby books for 9 months I was an expert on milestones.

You know the ones – the first time your baby smiles, sleeps through the night, rolls, sits, crawls, walks and talks.

You may know NOTHING about babies or children before you fall pregnant. But I guarantee you will know ALL the milestones, and when your child should meet them, by the time your little bundle of joy is first placed in your arms.

However, as a first time parent I didn’t really know as much about recognising signs. Signs that your child may have additional needs.  Signs that your child won’t reach milestones on time, if at all.My eldest son was born via emergency c-section, following a normal, easy, uneventful pregnancy. He emerged with white, almost translucent hair and was the talk of the ward – no-one had seen such a glorious shade of blonde before.

Recgnising signs: Gilbert as a newborn in his dad's arms - myhometruths.com

I remember taking him home and cradling him on our bed as my husband and I wondered what we should do now – we felt so out of our depth having to look after this tiny human being. His total dependence on us was overwhelming.

Recognising signs: Gilbert and his Dad - myhometruths.com

Somehow we managed to muddle through those first weeks as new parents. He fed well, put on weight and slept a lot. He had his unhappy moments but overall he was pretty cruisy – we were “lucky” parents.

We loved watching him lay in his bouncer, intensely looking around him. His eyes would never stay still – they were constantly moving from side to side as if he could not get enough of this new world around him.

He also had moments where he stilled and seemed to go into his own little world. We’d call these moments “Gilbert Time” and watched on indulgently as he fixated on something beyond our comprehension

We were also intrigued when we caught a sudden glow in his eyes – there were times when they would unexpectedly glow red. We thought it was a newborn quirk, just like his constant eye movements and his tendency to retreat into “Gilbert Time.”

Like most new parents we were diligent with his check-ups, determined to give him the very best start we possibly could. At his 6-week check-up, the community nurse expressed some concern with his eyes and asked us to follow up with our doctor.

We felt a frisson of concern but were confident there was nothing much to be concerned about. He was meeting his milestones after all – that’s surely all that mattered?

The doctor referred us to a paediatric eye specialist to cover all bases but didn’t seem overly concerned – he was a healthy little boy and we were doing everything right as new parents. Our concern started to melt away in the face of his lack of concern.

We duly visited the paediatric eye specialist so he could examine our little cherubic baby boy. We almost felt sorry for wasting his time – surely there was nothing to be concerned about? Our baby was happy and content and meeting his milestones – there couldn’t possibly be anything wrong.

Except there was.

Our son had oculocutaneous albinism.

Recognising signs: Baby Gilbert - myhometruths.com

The signs were all around us, but as new parents, we didn’t recognise them. The white hair. The pale eyes. The translucent skin. The occasional reddish glow in his eyes. The constant movement of his pupils. The tendency to zone out with sensory overwhelm. The inability to cope with glare & too much sun.

These are all signs of albinism. And at 11 weeks of age, our perfect little boy was diagnosed with a condition that only occurs in 1 in 20,000 people worldwide. A condition that is misunderstood and misrepresented the world over.

To that point he had met pretty much all his milestones. He would smile and laugh and respond to our voices. He was gaining weight, sleeping as well as a baby can and bringing so much joy to our lives.

Recognising signs: Gilbert as a baby with his dad - myhometruths.com

So you can understand our shock and disbelief when we first received his diagnosis.

Albinism is not life-limiting and while my son does have a significant vision impairment it has never stopped him doing anything he really wants to do. And he still ended up meeting all his milestones, he just reached them at his own pace and in his own time.

Monitoring milestones is an important way to assess a child’s development but it really is only one piece of the parenting picture. Recognising signs of potential concern is another, one that isn’t really talked about so much in all those baby books.

We were lucky that we had medical specialists to help recognise the signs that we missed so we could give our son the best possible start.

Because it’s not possible to read every single sign, let alone understand whether it is something to worry about or not. 

(So please don’t get wrapped up in guilt if you miss signs (like I did) – we are all only human after all x)

Recognising signs: Gilbert as a toddler - myhometruths.com

But as parents we need to understand that recognising signs is just as important as reaching milestones.

I just wished I had have known that after all my copious amount of pregnancy reading!

Parenting Children with Special Needs

This post is part of a new Special Needs Parenting blog hop where myself and other special needs bloggers will share our thoughts on a set theme each month. This month’s theme is “recognising signs.” I’d love for you to check out all the other posts linked up for this month!

source;http://myhometruths.com/

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Albinism: a ‘curse’ turned blessing

Uganda (MNN) — Africa’s problems are usually summed in one word — poverty. But there’s so much more happening in the 54 countries making up the continent.

More than Poverty

Take Uganda for example. It’s a country marked by the extreme poverty ravishing its people. But, it’s also dealing with the negative effects of superstition towards albinos.

Albinism by definition is a genetic disorder, hereditarily passed on, causing the skin, hair, and even eyes to appear colorless.

People with albinism usually suffer from poor eye sight caused by the irises’ inability to block light. They’re visually and physically sensitive to light, have increased chances of skin cancer, and much more.

Albinism, A Misunderstood ‘Curse’

In Uganda, and many other African countries, albinism is viewed as a curse. Every Child Ministries‘ International Executive Director Mark Luckey says, “To understand the albino project we have, you have to understand albinism, what albinism is. It’s prevalent in many, many families in many, many communities in Africa. And it is definitely something that carries a stigma with it, a very severe stigma. In fact, many albino children, and adults, face pretty difficult situations.”

According to Luckey, individuals with albinism are usually shunned. They’re shut away and cut off from society. Families are often ashamed of them. Albinos are criticized, discriminated against, teased, and in some cases – killed.

Because of superstitions, some people believe witch doctors can make a potion using an albino child’s body parts to bring luck. This is particularly common in Tanzania, where children will be trafficked from other countries to be slaughtered. A complete set of body parts can be sold for up to $75,000 USD. Still, these are in extreme cases, all brought on by a severe misunderstanding.

“At the same time, we realize that a big part of the problem with albinism was not just the disease itself, or the condition itself, but the way people perceived it,” Luckey explains. “And so we spent time developing a curriculum we can share, or that we use in teaching community leaders, church leaders, [and] school leaders what albinism is.”

A Helping Hand

ECM’s albino program is mainly in Uganda, focusing in areas with higher rates of albinism. So far, ECM’s work is helping communities realize albinism isn’t a curse or a family string of bad luck, but a medical condition.

“Albinism looks very different. So if you’re in an African context, now you have this child who not only is white in skin color, but the skin is not in very good condition. It’s very affect[ed] by the sun…it can produce really horrible sores all over the skin.”

(Photo Courtesy Every Child Ministries via Facebook)

(Photo Courtesy Every Child Ministries via Facebook)

So why the discrimination? Luckey explains, “It’s culturally true anywhere you go, when a person is different from the norm, they are seen as less than human, or depending on the severity of the condition, they’re certainly discriminated against, put down.”

The bad stigma towards albinos goes as far as breaking up families. If there’s a child born with albinism, the majority of

The bad stigma towards albinos goes as far as breaking up families. If there’s a child born with albinism, the majority of fathers leave. If there’s a second child born with this hereditary disorder, it’s viewed as a curse on the family. Full abandonment by the father is almost always the result.

Love’s Power

So when strangers come in and freely love those with albinism, educate them and others, and work to make them feel accepted and understood — people want to know why.

The answer? Christ.

“We talk to a lot of families who we have helped. Of course they’re extremely grateful, but it changes the perception in the community. They will say things like, ‘We used to think that albinism was a curse. If you had that, you would never be blessed, you would never get anything. Now we see that these kids are being helped, and we realize that God loves them,’” Luckey explains.

(Photo Courtesy Every Child Ministries via Facebook)

(Photo courtesy of Every Child Ministries via Facebook)

Luckey says by sharing Christ’s love and the Gospel in both words and acts, communities are seeing the love of Christ.

Kids, particularly those with albinism, are coming to know Christ and so are the people in their lives. It’s changing lives not only in the here and now, but also for eternity.

By God’s grace, this love and education is helping change communities and shift perspectives to view albinos not as curses, but as people who can be blessed. Once word of ECM albino programs gets out in the communities, albinos and their families come out from hiding. As a result, ECM is trying to expand its albino project to meet the peoples’ needs.

Will You Help?

Giving: ECM sponsors children with albinism to make sure they’re taken care of, educated, and that their needs are met. But to do this, it takes donors willing to give a little financially and watch God do a lot. To donate or sponsor a child, click here!

Praying: Please pray for ECM’s albino program to receive support, grow, and continue to reach albinos and their families with education, support, and Christ’s redemptive love.

Also, pray for those with albinism’s protection and for ECM’s time of change, for wisdom moving forward, and for a clear vision to how God desires to use the ministry.

source;http://www.mnnonline.org