albinism
@lilttownmommie (1473)
United States
November 30, 2006 8:01pm CST
Do you or someone you know have albinism? How hard was/is it for school and stuff, are you/them legally blind? My son is albino, he's only 4.5 so we haven't started school yet, but his vision suffers horribly from it, we have been seeing a optical specialist since he was 3 months old.
3 responses
@packgirl4 (402)
• United States
10 Jun 07
I have a child that is 4 and a half also that has albinism. His vision has improved very much. My osns skin tone looks just like mine, so when he is with me or at school he just looks like everyone else. But my husband is black. So although he is his father, you can't tell he is african american at all, except for his hair.
It is defintely a struggle because not many people no about this disorder since it is so rare. Contact me if you ever have any questions.
It's good to know there is someone else on here!!!
@lilttownmommie (1473)
• United States
13 Jun 07
thanks for responding, it is good to know that someone else on here is in the same shoes. I am very nervous about ym son starting school this fall. Although I believe that he has the 2nd type of Albinism where his skin & hair is slowly developing some pigment, this summer his skin has tanned some while he has been out in the sun, this is a first for us, usually he just stays that pasty white color. Good Luck with your son, I'm glad to hear that his vision has improved, we go back to the
@lilttownmommie (1473)
• United States
13 Jun 07
sorry, my computer is goofy, but we go back to the eye specialist on the 29th to see how my son's vision is.
@packgirl4 (402)
• United States
16 Jun 07
My sons skin is the same way.
He all of a sudden is starting to tan this year, even though he is smothered in sunscreen every single day!! I don't understand it, but at least I know he has developed some pigment! Which is a definite good thing. Let me know how his appt turns out. We go back sometime this summer, but we have to wait to get some insurance stuff figured out before we can go again!! Good old insurance!
@mclendon (308)
• United States
15 May 08
If you guys are still out there somewhere, I wanted to respond and let you know that I have two children with albinism. They both have low vision and are in 2nd grade. They get some help from a teacher for the Visually Impaired and the school provides a few extra tools for them like bar magnifiers, slant boards for their desks, large print when needed, special testing situations, etc.
They are both considered intellectually gifted.
I used to take them to a preschool program specifically for visually impaired children. They told me there that it seems that children with albinism tend to be above average in intelligence and have a tendency toward creativity and also hyperactivity. This is just anecdotal evidence they gathered over 20+ years of working with kids with albinism.
My two are rather fidigity, talkative and active. One has been officially diagnosed with ADHD. They both do very well in school however. Supportive, understanding teachers and parents who are informed and can advocate for them make all the difference.
@dongyue120513 (29)
• China
3 Jul 07
i don't know any people that around me have albinism,but i recently know a Chinese high-fashion model Connie Chiu has it.Her family moved from Hongkong to Sweden when she's 7,for the sunlight is more bearable to her sensitive skin and eyes.She now has a very normal life,and starred in a music video,which made her quite famous.So i just want to say that people who have albinism can also live a normal life.I learnt from text books that Sweden recieves the least sunlight,so maybe you can also think about it and move to somewhere else which is more suitable for you child.
