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Albinism
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amother


 

Post Mon, Sep 15 2014, 7:40 pm
Does anyone here have a child with albinism? My baby was recently diagnosed with this and I would love to hear about other people's experience with this.
Thank you!
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ectomorph




 
 
    
 

Post Mon, Sep 15 2014, 7:58 pm
No, but it sounds fascinating.
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flmommy




 
 
    
 

Post Mon, Sep 15 2014, 8:03 pm
No personal experience but I see a frum boy in my town with it so there must be others? I know that he wears glasses and I've heard eye problems are common. That's all I know, I hope all is well and healthy with your child.
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amother


 

Post Tue, Sep 16 2014, 12:17 pm
Thanks Smile
Anyone else?
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DBW1




 
 
    
 

Post Wed, Sep 17 2014, 5:02 pm
Hi! My daughter has albinism. You are not alone! AND it is not as scary as you may think.
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amother
Magenta


 

Post Wed, Sep 17 2014, 5:17 pm
My dh has albinism. His siblings are normal.

The chance of being a carrier is one in 100. If two carriers marry each other, the chance of having an albino is one in four. There are different types of albinism. If a carrier of type 1 marries a carrier of type 2, the kids will be normal. That's why it's very rare.

Have a lot of sunscreen on hand for the summer.
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amother
Magenta


 

Post Wed, Sep 17 2014, 5:20 pm
My dh has a friend who also has albinism. He is a financial analyst. With computers nowadays and being able to enlarge the screens, there are more options for jobs.
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Amelia Bedelia




 
 
    
 

Post Wed, Sep 17 2014, 6:36 pm
I don't really know much about albinism, but how does albinism affect vision? For that matter, what else is affected by albinism besides external factors (eye, hair, and skin color)?
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amother
Magenta


 

Post Wed, Sep 17 2014, 7:26 pm
Amelia Bedelia wrote:
I don't really know much about albinism, but how does albinism affect vision? For that matter, what else is affected by albinism besides external factors (eye, hair, and skin color)?


The recessive gene for albinism means that little or no melanin is produced. Melanin is a pigment. The lack of melanin in the eye causes vision problems, but I have no idea why this causes nystagmus (involuntary eye movements).

Even among all people who have a deformity of the same gene (or mutation), there are different degrees. Some people see better than others and some have more nystagmus than others. There are also many shades of pigment depending on the specific DNA sequence within the gene that is out of whack.

As far as genetic testing is concerned, if you have it in your family and you know you may be a carrier, then it doesn't hurt to test for it and test potential spouse. Since it is very rare, it doesn't pay for everyone to get tested.
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amother


 

Post Wed, Sep 17 2014, 9:01 pm
Thank you!
How old are the people you know? How is/was school for her?
Is there anything else that is affected by their vision? (besides for jobs as someone said)
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DBW1




 
 
    
 

Post Wed, Sep 17 2014, 9:37 pm
Nystagmus is the symptom of the underdeveloped optic nerve in albinos. Meaning, it can be controlled via patching (as one may confuse an albino as having lazy eye) or even surgery. However, even if the nystagmus is controlled, the person will remain an albino.
Deformity of a gene is a very negative way of thinking about it. Are blue eyed people deformed? Are left handed people? How about short people? Or very tall? or stupid people? or geniuses?
Albinism is a genetic mutation. There is no one alive that does not genetic mutations.
NOT A SINGLE PERSON ALIVE!
That being said, hair color may be affected. A person could have brown hair and still have ocular albinism (albinism of the eye). And someone with ocular albinism may have normal skin tone.
There are types of albinism that affects skin and hair as well. However, my daughter with OCA1 (ocular cutaneous albinism type 1, has affected hair, skin, and eyes looks like a "regular" kid that has nystagmus when she is tired.
People with albinism have a range of vision. It could be anywhere from 20/40-50 to 20/400 with most people ranging in the 20/100-200 range.
My cousin with albinism has 20/40.
It is to early to know with my daughter.
My husband had an attending while he was in residency who was an albino. So being an albino does not affect their brains and they CAN be doctors. Maybe not surgeons, although with surgeries being done through the use of fiber optics... who know?
probably best if albinos are not lifeguards due to sun exposure or a pilot.


Last edited by DBW1 on Wed, Sep 17 2014, 9:56 pm; edited 1 time in total
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DBW1




 
 
    
 

Post Wed, Sep 17 2014, 9:55 pm
* my daughter looks like a regular blond hair blue eyed kid. Some have red eyes, because the lack of pigment makes the eyes appear red. One is actually seeing the blood vessels behind the eye giving the appearance of red eye (like photos).
How old is your child? mine was diagnosed at 4m. She is now 19m.
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Chana Miriam S




 
 
    
 

Post Wed, Sep 17 2014, 9:59 pm
amother wrote:
Does anyone here have a child with albinism? My baby was recently diagnosed with this and I would love to hear about other people's experience with this.
Thank you!


My friend is a sefardi Israeli who is on the albino spectrum. She looks Swedish and has the eye problems associated with albinism. Her eyes are a light light brown.

She has five kids and the family travels around the world dividing time between Japan, Russia, israel and France. On the whole, her family seems to have a very active adventurous life and she is wholeheartedly a part of it!

She has a masters degree and speaks the languages of the countries she travels to.
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amother


 

Post Thu, Sep 18 2014, 11:54 am
My son is 6 months old - he was diagnosed at 3 months. I brought him to a pediatric ophthalmologist because of his nystagmus - his eyes moving back and forth. He is pretty light and has very very blond hair, but that didn't look so strange right away since my family is light. His new hair that grew in since he was born is also much lighter than what he had when he was born
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DBW1




 
 
    
 

Post Thu, Sep 18 2014, 10:01 pm
We found out because my daughter had nystagmus as well. She was born with an Afro of white/blond hair, but that is normal for my family.
There is an organization you may want to join called NOAH. We have not joined it, but my cousin has and has told me that it has been helpful.
There is only one thing you should be aware of- your son MAY seem to be progressing a slower than his peers. This is only due to the fact that for someone with low vision it takes effort to see. Meaning, for you and me, we do not have to work on seeing. We do it naturally without thinking about it. But for a child with low vision, seeing is a skill that needs to be worked on. Add that to all of the other skills that children need to learn and it can get overwhelming. He should catch up by kindergarten or first grade if he shows any sort of delay. You may want to consider vision therapy.
Other than that, you should buy stock in a suntan lotion company that uses a physical barrier (like zinc oxide or titanium oxide). Neutrogena baby is the one that we use.
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DBW1




 
 
    
 

Post Thu, Sep 18 2014, 10:04 pm
Cute anecdote- when my daughter wants to go outside, she hands me the suntan lotion and my shoes.
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amother


 

Post Sat, Sep 20 2014, 9:08 pm
What kind of vision therapy should we be getting? Is it what we would get through early intervention, or something else?

We actually did join NOAH, and they sent us a nice welcome package with their book, which is very helpful, and sunglasses, sunscreen, a black and white baby book, and a few other things.

Does your daughter need sunglasses outside? My baby squints and is not too happy in the sun, and I never really noticed that it was only outside until I found out about this and started reading up about it.
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amother


 

Post Sat, Sep 20 2014, 9:21 pm
amother wrote:
What kind of vision therapy should we be getting? Is it what we would get through early intervention, or something else?

We actually did join NOAH, and they sent us a nice welcome package with their book, which is very helpful, and sunglasses, sunscreen, a black and white baby book, and a few other things.

Does your daughter need sunglasses outside? My baby squints and is not too happy in the sun, and I never really noticed that it was only outside until I found out about this and started reading up about it.


My dh is sensitive to sunlight. He wears hats to block the sun.

My dh got vision therapy for nystagmus when he was younger. It's not offered from early intervention. You need to go to an opthalmologist (eye doctor) for a recommendation for someone who does vision therapy.
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amother
Magenta


 

Post Sat, Sep 20 2014, 9:28 pm
amother wrote:
Thank you!
How old are the people you know? How is/was school for her?
Is there anything else that is affected by their vision? (besides for jobs as someone said)


My dh has a hard time seeing people from a distance. Living in Monsey is not an option for us. There is not enough light for him to see potholes and the like. He trips when he doesn't see potholes.

In NYC, there are more streetlights so it's safer. Even so, if there are branches from a tree blocking the light he will trip over cracks in the sidewalk. He already knows where the cracks are on certain sidewalks. He refuses to use a seeing cane.
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DBW1




 
 
    
 

Post Sun, Sep 21 2014, 4:55 pm
What your child sees depends on his vision. Every person with albinism, like every person without, is unique. Some people will need seeing a Seeing Eye dog because their vision is so poor (when they are old enough), some will need a cane, some will just need a pair of UVA/B sunglasses.
My daughter is only 19m, so the ophthalmologist can’t tell us what her vision is yet. She sees cracks in the sidewalk. But if a sidewalk is two different tones of gray, she will crawl over it until she learns the height difference. Right now she wears a hat with a wide brim, and sunglasses around her neck Wink.
All people with ocular albinism are sensitive to light, though. They see better when rooms are dim. This is something we learned in vision therapy.
We get vision therapy through the Cleveland Sight Center. It is free for all children ages 0-3 with any vision problems. I do not know what NY has, but being a democratic state, I am sure you guys have something. We are constantly thanking Hashem that our daughter ONLY has albinism. Most of the other children have serious birth defects (some genetic some not) or have been damaged in some way.
That perspective was the MOST important thing that we have gained from the sight center as of yet. My daughter is extremely independent and opinionated. We feel that even though she is behind right now, the world had better watch out.
When we received the preliminary diagnosis, it looked to be something much worse the albinism. Something fatal. So again, it is just albinism. Just a little sunscreen and a big floppy hat. And one child determined not to have others telling her what she can and can’t do in life.
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