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My Husband Has Albinism


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  #1  
July 9th, 2010, 09:30 PM
Hannah-Banana's Avatar Laikon's Mommy
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Location: Hometown: Warsaw, Mo
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Hi! I'm Hannah and my DH is Tyler. He has Oculocutaneous Albinism Type 1a, other wise known as OCA1a. Here's a snippet from the NOAH website

Quote:
Oculocutaneous albinism type 1 (OCA1 or tyrosinase-related albinism) results from a genetic defect in an enzyme called tyrosinase (hence ‘ty’ above). This enzyme helps the body to change the amino acid tyrosine into pigment. (An amino acid is a “building block” of protein.) There are two subtypes of OCA1. In OCA1a, the enzyme is inactive and no melanin is produced, leading to white hair and very light skin. In OCA1b, the enzyme is minimally active and a small amount of melanin is produced, leading to hair that may darken to blond, yellow/orange or even light brown, as well as slightly more pigment in the skin
We're NTNP at the moment, and I'm very excited! But every once in awhile, in those desperate moments everyone gets as a human being, I worry that my child could be born with albinism as well. And I worry for my grandchildren. It's a 1 in 16,000 chance that I would have the same gene defect that he and his parents have. And if that were the case it would be a 1 in 4 chance of our children having some form of albinism.

Example: Tyler is his parent's first child. He has 'full' albinism. He has three sisters, Ashlee, Ricky, and Kamryn. Ashlee and Ricky have 'partial' albinism, it mainly effects their skin and eyes. Kamryn has none.

Does anyone else worry if you're making the right decision about bringing a child into this world with the potential to be handy-capped? My husband is legally blind. He can't drive a car or anything like that. He's even said that he would hate himself if his child had what he has. He's had to undergo many painful eye surgeries since he was born just so he can have the minimal eye site he has today. Sorry for the rant, just worried I guess. Hugs all around!!
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  #2  
July 10th, 2010, 06:34 AM
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Welcome Sweetie!!

Quote:
Does anyone else worry if you're making the right decision about bringing a child into this world with the potential to be handy-capped? My husband is legally blind. He can't drive a car or anything like that. He's even said that he would hate himself if his child had what he has. He's had to undergo many painful eye surgeries since he was born just so he can have the minimal eye site he has today. Sorry for the rant, just worried I guess. Hugs all around!
A LOT of disabled parents worry about this type of thing. A lot of Hearing Losses are hereditary. Most parents put aside these worries because if you are worrying about what if your whole life you will never enjoy anything. If there isn't someone saying over your shoulder 'If you have a child he WILL have this' then I wouldn't worry yet.

Can you be tested for the gene?
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  #3  
July 10th, 2010, 09:38 AM
Hannah-Banana's Avatar Laikon's Mommy
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The sad thing is, no. There is no cure and no 'treatment' for albinism, so doctors haven't invested much time in developing a way to test for it. The only way they can tell is something to do with the ultrasound near the end of your pregnancy. And I've only heard rumors of that. I just got my first bfp today, so I guess only time will tell.

And thank you for the welcome. It's nice to have someone listen. I know it's a slim chance, but it's one of those worries you just can't help, you know?
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  #4  
July 10th, 2010, 10:58 AM
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Quote:
Originally Posted by Hannah-Banana View Post
The sad thing is, no. There is no cure and no 'treatment' for albinism, so doctors haven't invested much time in developing a way to test for it. The only way they can tell is something to do with the ultrasound near the end of your pregnancy. And I've only heard rumors of that. I just got my first bfp today, so I guess only time will tell.

And thank you for the welcome. It's nice to have someone listen. I know it's a slim chance, but it's one of those worries you just can't help, you know?
OH CONGRATULATIONS!!!!! I'm so happy for you!!!!!! I hope you will stick around this board so we can keep up with your pregnancy!

I do understand We're hear for you no matter what sweetie. Even when your baby turns out 100% fine we'd love to have you.

We're done having BBs so I have to live vicariously through others lol
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  #5  
July 10th, 2010, 02:59 PM
Hannah-Banana's Avatar Laikon's Mommy
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I definitely will. I'm sure we'll need support, Tyler is worried about parenting and being visually impaired. Like what if the baby picks something up and puts it in it's mouth and chokes and he doesn't see it in time? That sort of thing. I tell him he worries too much all the time.
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  #6  
July 10th, 2010, 05:05 PM
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Quote:
Originally Posted by Hannah-Banana View Post
I definitely will. I'm sure we'll need support, Tyler is worried about parenting and being visually impaired. Like what if the baby picks something up and puts it in it's mouth and chokes and he doesn't see it in time? That sort of thing. I tell him he worries too much all the time.
Just tell Tyler that I know a couple who are both blind with 5 kids. Mom is legally blind and can see very slightly, dad is completely blind. Their kids area amazing and they've never had a problem like what he's worrying about
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  #7  
July 10th, 2010, 09:02 PM
Hannah-Banana's Avatar Laikon's Mommy
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Wow that's encouraging. Really it is, that helps a lot. I took another test and it was positive. But my MIL thinks I'm more like 12wks instead of 6wks. Which would mean I'm getting ready to start my 2nd trimester. Wow, and I just found out I was prego!!
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  #8  
July 11th, 2010, 09:39 PM
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Quote:
Originally Posted by Hannah-Banana View Post
Wow that's encouraging. Really it is, that helps a lot. I took another test and it was positive. But my MIL thinks I'm more like 12wks instead of 6wks. Which would mean I'm getting ready to start my 2nd trimester. Wow, and I just found out I was prego!!
I think that would be a blessing in disguise. Not worrying about the 1st trimester worries. You should probably get your first drs appointment soon then just in case. Just let them know you aren't entirely sure your dates are correct
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  #9  
July 24th, 2010, 12:59 AM
Hannah-Banana's Avatar Laikon's Mommy
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Hi! Sorry it's been awhile. I'll be more active on this board after the baby is born. I'm sure we as a family will need the support then. I found out that I'm on schedule, the last couple of months were just a fluke. I'm currently, 8 weeks. Hope to get to know you guys soon. See you a lot more come March!
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  #10  
July 25th, 2010, 08:02 AM
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WOOHOOO! Congrats on your 8 week mark Sweetie!
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