A great video which shows the limited vision a person with albinism has.
A big thanks to my new friend Krystal, who has a medical background, compiled this page of FAQ about Albinism. You can check out the rest of her blog here Hope Sky High and follow her family's journey to adopt! While I cannot share more info at this time, our families will have a very awesome and special connection.
1. What is albinism? Is it like albino?
Yes, albinism is the condition that many people refer to as “albino”. However, some people in the albinism community frown upon use of the term albino. Since we are intellectually astute individuals, we will use the non-offensive term of albinism.
2. Why do some people find the word “albino” to be offensive?
Picture this: “Hey there’s Betsy. She is albino”. Well, albinism is a medical diagnosis. Most people do not like to be labeled by their medical diagnoses. It would be impolite to say “Hey there is Betsy. She is cancer.” Or “Let me introduce you to Fred. He is depression.” That’s sort of what it is like when a person says, “Hey there is Betsy. She is albino”.
3. What is albinism?
Albinism is condition that results from a lack of melanin, or pigment. Albinism can be divided into two broad categories. First, is a type which affects the skin and eyes (oculocutaneous albinism). Second is a type which affects only the eyes (ocular albinism). Within the category of oculocutaneous albinism, there are about 10 different subtypes of albinism.
4. What causes the lack of pigment?
Melanin is what gives our bodies pigment, which is responsible for eye color, skin color, hair color, etc. In people with albinism there is a mutation (usually on either chromosome 9, 11, or 15) which causes melanin production to be either absent or decreased.
5. How do people develop albinism?
Most types of albinism are inherited when a person receives the albinism gene from both parents. The exception is one type of ocular (eye only) albinism, which is passed on from mothers to their sons.
6. How does albinism affect a person?
When most people think of albinism, they picture a fair skinned person with light hair, who is sensitive to the sun. While many people with albinism must liberally use sunscreen and monitor their skin, it is important to recognize that some people with albinism have normal skin pigmentation. Also, what many people don’t know is that albinism also affects vision. In fact, all people with albinism will have some vision impairment, but not all people with albinism are fair skinned. The vision changes associated with albinism generally affect daily life of those with albinism more than their skin color.
7. How does albinism affect vision?
Melanin, or pigment, is necessary for normal fetal development of the eye. Lack of melanin causes abnormal development of part of the retina called the fovea. Nerve connections between the retina and the brain are also affected if there is no melanin during development.
These developmental changes cause decreased visual acuity, which is referred to as low vision.
8. Do glasses correct low vision from albinism?
People with albinism can’t have 20/20 vision, even with glasses. If you wear glasses (and don’t have albinism), most likely it is because the lens of your eye is misshapen and the glasses compensate for that. Remember that the low vision of albinism is due to an abnormally developed retina and optic nerve. Glasses do not correct for the abnormality of the retina and optic nerve, thus making the visual impairment non-correctable with modern technology.
**Of course, people with albinism can also have abnormally shaped lenses, in addition to low vision from albinism. In this case, they would likely benefit from glasses-but they would not correct to 20/20 because they would still have the abnormal retina/optic nerve.
9. Can you elaborate on what low vision means?
People with albinism always have decreased vision, but the degree varies greatly among individuals.
Vision may vary from 20/40 in some individuals to 20/400 in others. People with albinism may be “legally blind” which is defined as vision that is not correctable to better than 20/200. However, this is quite different from total blindness. Adults with albinism often describe their vision as lacking fine detail, sort of like a picture with low resolution.
10. Does low vision get worse over time?
No. Albinism is a non-degenerative condition, which means it does not worsen with time (other than the “normal” changes that occur with age and are correctable with glasses). In fact, with some forms of albinism, vision may actually improve slightly throughout childhood.
11. How does low vision practically affect daily life?
If you were watching a child with albinism play, you probably would not know that he/she has low vision because children with albinism compensate incredibly well! With regard to school and reading-depending on the degree of visual impairment, some accommodations may be necessary. These include large print books, magnifiers, audio books, high contrast materials and other low vision assistive devices. Although Braille is typically not necessary for people with albinism, some may learn to use it in order to give their eyes a rest. Depending on the laws of the state and the degree of visual impairment, people with albinism may or may not legally be able to drive. Many children with albinism undergo a type of therapy called “orientation and mobility training” which helps them learn to navigate their surroundings.
12. So, now I understand that albinism can affect the skin and cause low vision. Is there anything else commonly associated with albinism?
Yes, another common finding with the condition is nystagmus. Nystagmus is involuntary eye movements which are usually side-to-side movements. These involuntary eye movements may also contribute to the low vision associated with albinism. Nystagmus is present to varying degrees in people with albinism and typically declines with age. It tends to increase when the person is upset, excited or tired.
13. Does albinism affect mental development or lifespan?
No. People with albinism have normal mental development. Some studies have even showed that people with albinism have slightly higher IQs than the general population. People with albinism have the same lifespan as those without albinism.
14. Don’t people with albinism have red eyes?
No. This is a pop-culture myth. Generally, people with albinism have blue or slate gray eyes. Some people with greater amounts of pigment have green or hazel eyes. Because the eye of the person with albinism has an iris which does not block out light, a flash photo of someone with albinism may show the light of the flash reflected off of the back of the eye, giving the appearance in a photograph that they have red eyes.
15. How common is albinism?
Albinism occurs in approximately 1 in 17,000 people worldwide. Approximately 18,000 people in the United States have albinism. About 1 in every 75 people are carriers for albinism. Albinism is observed in all ethnicities and racial groups. Ocular albinism (eye only albinism) affects primarily males.
16. Do people with albinism always have children with albinism?
Not necessarily, whether or not a person with albinism has children with albinism depends on the genetic make-up of their partner. Remember that generally, a person with albinism has received the albinism gene from both sets of their parents.
17. Is there anything else you would like me to know, Krystal, about albinism?
Why yes, thank you for asking. Before I had an invested interest in albinism, I was blissfully unaware of the pop-culture/media portrayal of those with albinism. Once my eyes were opened to it though, I was really quite appalled. Hollywood often utilizes the look of albinism when portraying evil and sinister characters. Activism has attempted combat these depictions. I hope to one day dedicate a full blog post to this disturbing pop-culture trend but for now, please visit the National Organization for Albinism and Hypopigmentation (NOAH) website to see a list of popular movies which perpetuate this portrayal of albinism. http://www.albinism.org/popcult/film.htm
18. Are there any other cultural influences that affect those with albinism?
In Ruby’s native land albinism is considered to be a curse. It is considered to be bad luck to be associated with an individual with albinism. Because of this, people with albinism often have difficulty finding employment and, in some places, are denied admission to school.
In parts of East Africa, body parts of those with albinism are considered to bring luck and wealth. Witchdoctors pay large sums of money for these body parts. Consequently, there have been many people with albinism who have been slaughtered for their body parts. Below are links to two 20/20 segments on the ongoing human rights crisis affecting those with albinism in East Africa.
This blog post is a compilation of my favorite answers and explanations from various informational websites on albinism. Credit to:
Vision For Tomorrow Foundation (http://www.visionfortomorrow.org/)
National Organization for Albinism and Hypopigmentation (NOAH) (http://www.albinism.org/index.html)