Albinism

"What you do, the way you think, makes you beautiful"

[albinisminlife]

Hi there! I'm a junior in high school and I believe I have the same if not very similar type of albinism that your daughter has, I'd have to look for the paperwork to be sure, but if we do have the same type Id like to tell you not to worry about her, she'll do just fine in school and in the world. I'm in America, I'm not dude where you are but growing up in the public school system I've had IEPs and a "vision teacher" that kind of serves as a intermediary to my teachers about accommodations 1/2

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[albinisminlife]

2/2 so maybe ask about that? If not I've found that as I grew up and learned to better communicate what I need in class and everything, my teachers are more than helpful. Also life in general isn't so different as my sister (who doesn't have albinism) I've just kind of found ways of doing things that to me are now second nature, like using the rail on stairs to judge how far down they are when I have trouble and little things like that. You're daughter is a beautiful child and she'll be okay <3

Thank you very much! I really appreciate the input. I always like getting information from people rather than a website where doctors or scientists say how it should be but winds up being completely different. If you don’t mind me asking, do you have nystagmus? That’s the most thing i am curious to know about with my daughter. She’s 4 now and i think it’s a little difficult or she doesn’t know how to tell me how she sees.

[albinisminlife]

Yo, albino here! Just wanted to say you're doing a good job!

Thank you. Just trying to do my part and help spread the word.

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[the-goddamazon-deactivingsoon-d]

I want to tape this to so many people’s foreheads.

[albinisminlife]

hi! i just wanted to thank you for creating this page. i'm a person with albinism and it's so nice to see pages about it that aren't A) patronizing or B) fetishizing. :)

HI! You are most welcome! I know how you feel. It seems that there are many people who don’t understand what albinism is and what they do know most of it isn’t true. Im hopping with this page we can educate more people about what albinism really is!

[albinisminlife]

http://www.visionfortomorrow.org/glossary-of-terms-aniridia/

[albinisminlife]

How does albinism affect the eyes.

People with albinism will always have vision problems that glasses or corrective lenses cannot fix. Glasses or contacts can help and make things more clear, but they cannot fix the problem like they would for someone without albinism. Of course,  the degree of vision impairment is different for each person depending on what type of albinism they have. Vision problems in albinism are a result from abnormal development of the retina and the overlapping patterns of nerve connections between the eye and the brain. Because of these problems with the eyes, doctors are able to diagnose albinism.

There are many difficulties when it comes to vision in people with albinism. Nystagmus is almost present in everyone who have albinism. Nystagmus is the regular horizontal back and forth movement of the eye.

Strabismus is another, is the crossing of one or both eyes.

Photophobia: is high sensitivity to bright lights like the sun and glare. You will see that people who have albinism squint while being outside if they aren't wearing sunglasses or even indoors when there are bright lights on. The iris has little to no pigmentation. What a lot of us don't know is that the colored part of our eyes, the iris, screens out the stray light that comes into the eye. Thats why our eyes have color to them. In a normal person light would only enter through the pupil. However in albinism the light also passes through the iris because of the lack of pigmentation.

Astigmatism also occurs.

Some also experience difficulty with depth perception. Where they won't be able to distinguish between steps, for example if the steps were the same color they wouldn't know if it was flat or not.

People with albinism also have difficulty seeing fine detail. A lot of people mistake this as them not being able to see a certain object at all. For example, if a cheerio fell on the floor as small as it is, it is a small detail. Some people might think that a person with albinism wouldn't be able to see it, but thats not right. What they can't see is the fine surface depressions and texture on the cheerio.

http://www.albinism.org/publications/what_is_albinism.html

[albinisminlife]

Those that have Albinism have red eyes.

This is completely FALSE, people with albinism do not have red eyes.There are different types of albinism that can contribute to what the eye color is depending on how much pigment is in the eye.  Although there are some who seem to have red eyes, they aren't, the red comes from the light reflecting in the eye. Because people with albinism don't have enough melanin to color the iris of the eye, the light that passes through the pupil reflects back which is called the red reflex. Therefore you can see through the retina to the blood vessels underneath giving the appearance of red eyes.

http://www.visionfortomorrow.org/albinisms-impact-on-vision/

[dreugh-deactivated20200704]

September 2, 2014

Albinism is a genetic condition that results in the lack of pigment in skin, hair and eyes. One in 1,400 people in Tanzania have albinism, compared to 1 in 20,000 people in the West.

But despite the relative frequency, the persecution of people with…

[albinisminlife]

There are many sites out there that educate and help people with albinism or parents with children who have albinism with any questions they have. Some of them are

The National Organization for Albinism and Hypo pigmentation

http://www.albinism.org/publications/what_is_albinism.html

There is also a Facebook page that helped me many times.

https://www.facebook.com/groups/Albinism/?fref=nf

[albinisminlife]

This is my daughter. She has been diagnosed with OCA2. OCA2 is one of the four types of albinism. It affects her eyes, hair and skin color. Her type is less aggressive than OCA1, where she has blue color irises and her hair is a very light blonde compared to the white that other individuals with albinism have. Her skin color is fair but has more pigment than someone with OCA1 would have. 

Since she has started school, I spoke with her teachers on what they could do to help her visually in class. I hope I can spread the word enough so that one day there will be tools available to children with albinism in school.

[albinisminlife]

Albinism is a genetic condition. In Bio111 under unit 4 we discuss genetics and how genes are transferred from parents to offspring. We learn what can determine things like eye color, height and hair color. We also discuss what can happen if genes are mutated. Albinism is one example of a mutated gene.

[albinisminlife]

Types of Albinism

Most people with Albinism have fine skin color and light hair. But thats not the case for everyone. There are 2 types of albinism. Ocular Albinism, which is rare. It mostly only affects the eyes. Usually people with ocular albinism have normal skin and hair coloring or they might be just slightly lighter than a family member. People with Oculocutaneous Albinism involves the lack of pigment in the hair, eyes and skin. Oculocutaneous Albinism is divided into 4 subtypes, OCA1, OCA2, OC3, OCA4. 

OCA1 is a genetic defect in the enzymes called tyrosinase. This enzyme helps the body change the amino acid tyrosine into pigment. There are two subtypes of OCA1. OCA1A, is where the enzymes are inactive and there is no melanin production. Which leads to white hair and very light skin. In OCA1B, the enzyme is partially active and only a small amount of melanin is produced, leading to hair that could darken to blonde, yellow / orange or light brown in the future, as well as slightly more pigment in the skin.

OCA2 is a form of a genetic defect in the P protein that helps the tyrosinase enzyme to function. People with OCA2 make a small amount of melanin pigment and can have hair color that ranges from very light blonde to brown.

OCA3 is rarely described and results from a genetic defect in TYRP1, a protein related to Tyrosinase. People with OCA3 have substantial pigmentation.

OCA4 results from a genetic defect in the  SLC45A2 protein that helps with the tyrosinase enzyme to function. Individuals with OCA4 make a minimal amount of melanin similar to people with OCA2.

http://www.albinism.org/publications/what_is_albinism.html

[albinisminlife]

What Is Albinism? - A Personal & Informal Presentation.

This is another very informative video on what albinism means and how people are born with it. He also explains the vision aspect of it.

[albinisminlife]

What Can I See

This is a video I found on YouTube made by Annette Ferguson. This video is an insight on how albinism affects peoples' vision. It has helped me to better understand how albinism might affect my own daughters' sight. Please keep in mind that not everyone with albinism is affected in the same way. This video was made to help people understand how albinism affects the vision of those who have it.

[albinisminlife]

What is Albinism?

Albinism is a genetically inherited condition. People who have albinism have little or no pigment to their hair, skin, and eyes. They have inherited altered genes that cannot produce the proper amounts of melanin their body needs.

Albinism affects 1 in 17,000 people in the US alone and it is not confined to once race. You can find people who have albinism all over the world.

http://www.albinism.org/publications/what_is_albinism.html

[becausebirds]

I met this albino Raven named Pearl today. It is only one of four known albino Ravens in the whole world.

Pearl lives in this woman’s house. The handler has a permit, and the bird is property of the government (like hawks and falcons). She is affiliated with the California Wildlife Center. Every time the handler stopped petting Pearl she started cawing. She really likes affection.

[loch-mint-deactivated20190810]

dangerscissor

[gryffon]

o!!!!!!!!!!!!!!!