Ocular albinismOOcular albinismOcular albinismEnglishGeneticsChild (0-12 years);Teen (13-18 years)EyesNervous systemConditions and diseasesCaregivers Adult (19+)NA2011-08-11T04:00:00ZJoanne Sutherland, MSc7.0000000000000067.00000000000001222.00000000000Health (A-Z) - ConditionsHealth A-Z<p>Ocular albinism is a genetic condition that affects the pigment in the eyes. It causes poor eyesight. OA does not affect the pigment in the skin or the hair. </p><h2>What is albinism?</h2> <p>Albinism (say: AL-buh-niz-um) is a name used for genetic conditions that cause a person to have no pigment or less pigment than usual. Pigment is what gives our eyes, skin and hair their colour. </p> <h3>There are two types of albinism:</h3> <p>When the skin, hair and eyes are involved, it is called oculocutaneous (say: ock-you-lo-kyoo-TAY-nee-us) albinism (OCA).</p> <p>When the eyes are involved, but skin and hair colouring are normal, it is called ocular albinism (OA).</p> <p>Both types of albinism will cause your child to have poor eyesight. Each child's vision will be affected in a different way. Albinism does not usually cause other medical problems or cause your child to have poor health. </p><h2>Key points</h2> <ul> <li>Ocular albinism is a genetic condition that affects the pigment in the eyes.</li> <li>OA affects only boys.</li> <li>Your child can see but is visually impaired.</li> <li>There are devices and tips that can help your child see better and to succeed in school.</li> </ul><h2>Characteristics of ocular albinism</h2> <h3>Eye colour </h3> <p>People with albinism often have pale blue eyes because they have very little pigment in the iris. Most children with albinism do not have red or pink eyes. </p> <h3>Iris Transillumination</h3> <p>When an eye doctor shines a bright light into an eye unaffected by albinism, the light bounces back out through the pupil. This is the effect that causes "red eye" in photographs. For children with albinism the light comes through the iris as well as the pupil. This is called iris transillumination. Most likely only the eye doctor will be able to tell if your child has iris transillumination.</p> <h3>Nystagmus</h3> <p>Nystagmus (say: na-STAG-mass) causes the eyes to "shake" or move rapidly. The eyes may move side to side, up and down or in a circle. Most children with albinism have some form of nystagmus. The shaking decreases with age and will usually level off by the time your child is seven. </p> <p>People sometimes think that nystagmus causes children to see a "moving world". This is a myth. </p> <h3>Chiasmal misrouting</h3> <p>In the eyes of a person without albinism, the optic nerve leaves each eye and goes to the centre of the brain. This is where the pathways from each eye meet in a structure called the optic chiasm. At the chiasm, about half of the nerve fibres travel to the opposite of the brain from where they started. The other half travel to the same side of the brain as they started. The crossing of the nerves helps us see properly and transmit images from the eye to the brain.</p> <p>For a person affected with albinism, the nerves split unevenly. For example instead of half going to each side of the brain, 30% may go to one side and 70% to the other. This is called chiasmal misrouting. </p> <p>Most people with albinism have chiasmal misrouting. It is uncommon in people who do not have a form of albinism. To find out if your child has chiasmal misrouting the eye doctor will do a test called a visual evoked potential (VEP).</p> <h3>Light Sensitivity</h3> <p>Most people with albinism are sensitive to bright lights. This can be uncomfortable but is usually not painful. Your child may want to wear sunglasses or a peaked cap both inside and outside to protect the eyes from bright lights. </p><h2>Who ocular albinism affects</h2> <p>OA is an X-linked disorder, which means it affects only boys. Women can be carriers of ocular albinism. People with ocular albinism have eyes that may look and work differently.</p> <p>For more information, please see <a href="/Article?contentid=877&language=English">Albinism and Genetics</a>.</p><h2>Vision care for children with albinism</h2> <p>Your child with albinism should visit the eye doctor at least once per year to have their eyes tested.</p> <p>Ask your eye doctor about your child's visual acuity (VA) before they start kindergarten. If your child has poor visual acuity (20/70 or worse), they may need vision aids for school. </p> <p>Your child will probably sit very close to the television and will hold books very close to their face. This is normal for children with albinism and will not hurt their eyes.</p> <h2>Devices and tips to help your child's vision</h2> <p>Your child may need assistive devices to see as well as possible. In Ontario, the Assistive Devices Program (ADP) may help you pay for devices to help your child's vision. Ask your eye doctor for a referral for a low-vision assessment. This type of service can show you devices to help your child see as well as possible.</p> <h3>These devices and tips may be especially helpful in school:</h3> <h3>Low tech</h3> <ul> <li>Eye glasses may help some children but will not give them 20/20 vision.</li> <li>Corning lenses are specially tinted eye glass lenses for light-sensitive children.</li> <li>A monocular is a mini-telescope that can be useful for seeing distances, especially for young students. Most monoculars come on a lanyard for your child to wear around their neck.</li> <li>Make sure your child has an itinerant teacher. This is a special teacher who comes to your child's class to make sure they have what they need to do well in school, such as large print books and an arrangement to sit at the front of the classroom.</li> <li>Closed circuit television (CCTV) is a machine that enlarges the print in books and photographs. Your child should have one at home and one at school.</li> <li>White canes are usually not used by people with albinism for getting around. They can, however, be a useful safety device to alert others, especially drivers, that your child is visually impaired.</li> </ul> <h3>High tech</h3> <p>High tech vision aids can be useful for older students once they need to do a lot of reading.</p> <ul> <li>Software programs (for example, JAWS and ZOOMTEXT) can help increase the size of icons, cursor and fonts when using the computer.</li> <li>Computerized dictation programs.</li> <li>Video cameras that bring images closer and can attach to a laptop computer.</li> </ul><h2>Support</h2> <strong>National Organization for Albinism and Hypopigmentation (NOAH)<a href="http://www.albinism.org/">www.albinism.org</a></strong> <p>Southern Ontario Chapter:</p> <p>Kitchener Ontario</p> <p>Contact person: Scott Gibson</p> <p>scott.gibson@albinism.org</p>
Albinisme oculaireAAlbinisme oculaireOcular albinismFrenchGeneticsChild (0-12 years);Teen (13-18 years)EyesNervous systemConditions and diseasesAdult (19+) CaregiversNA2011-08-11T04:00:00ZJoanne Sutherland, MScHealth (A-Z) - ConditionsHealth A-Z<p>L’albinisme oculaire est un trouble génétique qui touche la pigmentation des yeux. Il entraîne une mauvaise vue. L’albinisme oculaire ne nuit pas à la pigmentation de la peau ou des cheveux.</p><h2>Qu’est-ce que l’albinisme?</h2><p>L’albinisme (prononcez : al-bi-nis-me) est le nom employé pour désigner des troubles génétiques qui causent chez une personne l’absence ou la présence moins importante qu’à l’habitude de pigments. La pigmentation est ce qui donne leur couleur à nos yeux et à notre peau.</p><h3>Il existe deux types d’albinisme :</h3><p>Lorsque la peau, les cheveux et les yeux sont touchés, on le dit oculocutané (prononcez : o-ku-lo-ku-ta-né) (AOC).</p><p>Lorsque les yeux sont touchés, mais que la coloration de la peau et des cheveux est normale, on le nomme albinisme oculaire (AO). </p><p>Les deux types d’albinismes entraîneront une mauvaise vue chez votre enfant. La vision de chaque enfant sera touchée de manière différente. L’albinisme ne cause généralement pas d’autres problèmes médicaux ni ne nuit à la santé de votre enfant.<br></p><h3>Coloration de l’œil</h3><p>Les personnes atteintes d’albinisme ont souvent les yeux bleu pâle, car elles ont très peu de pigments dans l’iris. La plupart des enfants atteints d’albinisme n’ont pas les yeux rouges ou roses.</p><h3>Transillumination de l’iris</h3><p>Lorsqu’un ophtalmologue dirige une lumière brillante dans un œil non touché par l’albinisme, la lumière se réfléchit à l’extérieur de l’œil à travers la pupille. C’est l’effet qui cause les « yeux rouges » sur les photographies. Dans le cas d’enfants touchés par l’albinisme, la lumière traverse à la fois l’iris et la pupille. Il s’agit de la transillumination de l’iris. Fort probablement, seul l’ophtalmologue sera en mesure de vous dire si votre enfant est atteint de transillumination de l’iris.</p><h3>Nystagmus</h3><p>Le nystagmus (prononcez : (nis-tag-muss) cause un « tremblement » ou un mouvement rapide des yeux. Les yeux peuvent bouger de gauche à droite, de haut en bas ou en cercle. La plupart des enfants atteints d’albinisme présentent une forme de nystagmus. Le tremblement diminue avec l’âge et se sera habituellement stabilisé lorsque votre enfant atteindra l’âge de 7 ans.</p><p>Les gens pensent parfois que, en raison du nystagmus, les enfants perçoivent un « monde en mouvement ». Il s’agit d’un mythe.</p><h3>Erreur d’acheminement chiasmatique</h3><p>Dans les yeux d’une personne sans albinisme, le nerf optique relie chaque œil au centre du cerveau. C’est à cet endroit que les voies de chaque œil se rencontrent dans une structure nommée le chiasma optique. Au chiasma, environ la moitié des fibres nerveuses se dirigent vers le côté opposé du cerveau par rapport à l’endroit d’où elles sont parties. L’autre moitié se dirige du même côté du cerveau par rapport à l’endroit d’où elles sont parties. Le croisement des nerfs nous aide à voir adéquatement et à transmettre les images de l’œil au cerveau.</p><p>Dans le cas d’une personne touchée par l’albinisme, les nerves se divisent de manière inégale. Par exemple, au lieu que la moitié se dirige de chaque côté du cerveau, 30 % pourrait se diriger d’un côté et 70 % de l’autre. Il s’agit d’une erreur d’acheminement chiasmatique.</p><p>La plupart des personnes atteintes d’albinisme présentent une erreur d’acheminement chiasmatique. Il est peu fréquent de la rencontrer chez les personnes qui ne présentent pas une forme d’albinisme. Afin de déterminer si votre enfant présente une erreur d’acheminement chiasmatique, l’ophtalmologue procédera à un examen nommé « potentiels évoqués visuels » (PEV).</p><h3>Sensibilité à la lumière</h3><p>La plupart des personnes atteintes d’albinisme sont sensibles à la lumière vive. Ceci peut être inconfortable, mais n’est pas habituellement douloureux. Votre enfant pourrait vouloir porter des lunettes de soleil ou un casque à visière, à l’intérieur comme à l’extérieur, afin de protéger les yeux de la lumière vive.</p><h2>Qui est touché par l’albinisme oculaire</h2><p>L’albinisme oculaire est un trouble lié au chromosome X, ce qui signifie qu’il touche uniquement les garçons. Les femmes peuvent être porteuses de l’albinisme oculaire. Les yeux des personnes atteintes d’albinisme oculaire peuvent avoir l’air différents de ceux des autres et fonctionner différemment.</p><p>Pour de plus amples renseignements, veuillez consulter <a href="/Article?contentid=877&language=French">Albinisme et génétique</a>.</p><h2>Soins de la vision des enfants atteints d’albinisme</h2><p>Votre enfant atteint d’albinisme devrait consulter l’ophtalmologue au moins une fois par année afin de faire examiner ses yeux.</p><p>Consultez votre ophtalmologue au sujet de l’acuité visuelle (AV) de votre enfant avant son entrée à la maternelle. Si votre enfant a une mauvaise acuité visuelle (20/70 ou plus basse), il pourrait avoir besoin d’aides visuelles pour l’école.</p><p>Votre enfant s’assoira probablement très près de la télévision et tiendra ses livres très près de son visage. Ceci est normal chez les enfants atteints d’albinisme et n’endommagera pas leurs yeux.</p><h2>Appareils et conseils pouvant aider la vision de votre enfant</h2><p>Votre enfant pourrait avoir besoin d’appareils et accessoires fonctionnels afin de voir aussi bien que possible. En Ontario, le Programme des appareils et accessoires fonctionnels (PAAF) pourrait vous aider à défrayer les coûts des appareils afin d’aider la vision de votre enfant. Demandez à votre ophtalmologue une orientation vers une évaluation de basse vision. Ce type de service peut vous présenter des appareils permettant d’aider votre enfant à voir aussi bien que possible.</p><p>Ces appareils et conseils peuvent être particulièrement utiles à l’école :</p><h3>Technologie minimale</h3><ul><li>Des lunettes peuvent aider certains enfants, mais ne leur fourniront pas une vision 20/20.</li><li>Les lentilles Corning sont des lentilles de lunettes spécialement teintées pour les enfants sensibles à la lumière.</li><li>Un monoculaire est un télescope miniature qui peut être utile afin de voir à distance, particulièrement pour les jeunes étudiants. La plupart des monoculaires viennent avec une lanière afin que votre enfant le porte autour de son cou.</li><li>Assurez-vous qu’un professeur itinérant accompagne votre enfant. Il s’agit d’un professeur particulier qui accompagne votre enfant en classe afin de s’assurer qu’il a tout ce dont il a besoin pour réussir à l’école, comme des livres écrits en gros caractères et un accord lui permettant de s’asseoir à l’avant de la classe.</li><li>Une télévision en circuit fermé (TVCF) est une machine qui agrandit les caractères des livres ainsi que les photographies. Votre enfant devrait en avoir une à l’école et une à la maison.</li><li>Les canes blanches ne sont généralement pas employées par les personnes atteintes d’albinisme pour se déplacer. Elles peuvent, cependant, être un appareil de sécurité utile afin d’alerter les autres, particulièrement les chauffeurs, que votre enfant présente une déficience visuelle.</li></ul><h3>Haute technologie</h3><ul><li>Les aides visuelles de haute technologie peuvent être utiles pour les étudiants plus âgés une fois qu’ils ont besoin de lire davantage.</li><li>Des logiciels (par exemple, JAWS et ZOOMTEXT) qui permettent d’augmenter la taille des icônes, du curseur et des polices de caractères lorsqu’on utilise l’ordinateur.</li><li>Des programmes de reconnaissance vocale numériques.</li><li>Des caméras vidéo qui rapprochent les images et qui peuvent être fixées à un ordinateur portable.</li></ul><h3>National Organization for Albinism and Hypopigmentation (NOAH)</h3><p> <a href="http://www.albinism.org/">www.albinism.org</a></p>

 

 

Ocular albinism878.000000000000Ocular albinismOcular albinismOEnglishGeneticsChild (0-12 years);Teen (13-18 years)EyesNervous systemConditions and diseasesCaregivers Adult (19+)NA2011-08-11T04:00:00ZJoanne Sutherland, MSc7.0000000000000067.00000000000001222.00000000000Health (A-Z) - ConditionsHealth A-Z<p>Ocular albinism is a genetic condition that affects the pigment in the eyes. It causes poor eyesight. OA does not affect the pigment in the skin or the hair. </p><h2>What is albinism?</h2> <p>Albinism (say: AL-buh-niz-um) is a name used for genetic conditions that cause a person to have no pigment or less pigment than usual. Pigment is what gives our eyes, skin and hair their colour. </p> <h3>There are two types of albinism:</h3> <p>When the skin, hair and eyes are involved, it is called oculocutaneous (say: ock-you-lo-kyoo-TAY-nee-us) albinism (OCA).</p> <p>When the eyes are involved, but skin and hair colouring are normal, it is called ocular albinism (OA).</p> <p>Both types of albinism will cause your child to have poor eyesight. Each child's vision will be affected in a different way. Albinism does not usually cause other medical problems or cause your child to have poor health. </p><h2>Your child can see, but will not have perfect vision</h2> <p>It is important to understand that your child can see. Most children with albinism are not totally blind although many are legally blind.</p> <p>Albinism affects the retina and the optic nerves. The retina is the inside lining of the eye. It acts like a screen onto which pictures are projected. In eyes affected by albinism, the retina cannot produce a sharp image and the nerves do not transmit a clear image to the brain. </p> <p>Imagine a picture projected onto a smooth screen. It appears as a sharp visual picture. Now, imagine the same picture is projected onto a woolly blanket. The picture will appear to be fuzzy and out of focus. Imagine that a normal retina is like the smooth screen and a retina affected by albinism is like the woolly blanket. </p> <p>The sharpness or clearness of what people see is called visual acuity (VA). People with albinism have low visual acuity. This means that what they see can be unclear or blurry. </p> <p>For more information, please see our page on <a href="/Article?contentid=1941&language=English">Eye Anatomy and Function</a>.</p><h2>Key points</h2> <ul> <li>Ocular albinism is a genetic condition that affects the pigment in the eyes.</li> <li>OA affects only boys.</li> <li>Your child can see but is visually impaired.</li> <li>There are devices and tips that can help your child see better and to succeed in school.</li> </ul><h2>Characteristics of ocular albinism</h2> <h3>Eye colour </h3> <p>People with albinism often have pale blue eyes because they have very little pigment in the iris. Most children with albinism do not have red or pink eyes. </p> <h3>Iris Transillumination</h3> <p>When an eye doctor shines a bright light into an eye unaffected by albinism, the light bounces back out through the pupil. This is the effect that causes "red eye" in photographs. For children with albinism the light comes through the iris as well as the pupil. This is called iris transillumination. Most likely only the eye doctor will be able to tell if your child has iris transillumination.</p> <h3>Nystagmus</h3> <p>Nystagmus (say: na-STAG-mass) causes the eyes to "shake" or move rapidly. The eyes may move side to side, up and down or in a circle. Most children with albinism have some form of nystagmus. The shaking decreases with age and will usually level off by the time your child is seven. </p> <p>People sometimes think that nystagmus causes children to see a "moving world". This is a myth. </p> <h3>Chiasmal misrouting</h3> <p>In the eyes of a person without albinism, the optic nerve leaves each eye and goes to the centre of the brain. This is where the pathways from each eye meet in a structure called the optic chiasm. At the chiasm, about half of the nerve fibres travel to the opposite of the brain from where they started. The other half travel to the same side of the brain as they started. The crossing of the nerves helps us see properly and transmit images from the eye to the brain.</p> <p>For a person affected with albinism, the nerves split unevenly. For example instead of half going to each side of the brain, 30% may go to one side and 70% to the other. This is called chiasmal misrouting. </p> <p>Most people with albinism have chiasmal misrouting. It is uncommon in people who do not have a form of albinism. To find out if your child has chiasmal misrouting the eye doctor will do a test called a visual evoked potential (VEP).</p> <h3>Light Sensitivity</h3> <p>Most people with albinism are sensitive to bright lights. This can be uncomfortable but is usually not painful. Your child may want to wear sunglasses or a peaked cap both inside and outside to protect the eyes from bright lights. </p><h2>Who ocular albinism affects</h2> <p>OA is an X-linked disorder, which means it affects only boys. Women can be carriers of ocular albinism. People with ocular albinism have eyes that may look and work differently.</p> <p>For more information, please see <a href="/Article?contentid=877&language=English">Albinism and Genetics</a>.</p><h2>Vision care for children with albinism</h2> <p>Your child with albinism should visit the eye doctor at least once per year to have their eyes tested.</p> <p>Ask your eye doctor about your child's visual acuity (VA) before they start kindergarten. If your child has poor visual acuity (20/70 or worse), they may need vision aids for school. </p> <p>Your child will probably sit very close to the television and will hold books very close to their face. This is normal for children with albinism and will not hurt their eyes.</p> <h2>Devices and tips to help your child's vision</h2> <p>Your child may need assistive devices to see as well as possible. In Ontario, the Assistive Devices Program (ADP) may help you pay for devices to help your child's vision. Ask your eye doctor for a referral for a low-vision assessment. This type of service can show you devices to help your child see as well as possible.</p> <h3>These devices and tips may be especially helpful in school:</h3> <h3>Low tech</h3> <ul> <li>Eye glasses may help some children but will not give them 20/20 vision.</li> <li>Corning lenses are specially tinted eye glass lenses for light-sensitive children.</li> <li>A monocular is a mini-telescope that can be useful for seeing distances, especially for young students. Most monoculars come on a lanyard for your child to wear around their neck.</li> <li>Make sure your child has an itinerant teacher. This is a special teacher who comes to your child's class to make sure they have what they need to do well in school, such as large print books and an arrangement to sit at the front of the classroom.</li> <li>Closed circuit television (CCTV) is a machine that enlarges the print in books and photographs. Your child should have one at home and one at school.</li> <li>White canes are usually not used by people with albinism for getting around. They can, however, be a useful safety device to alert others, especially drivers, that your child is visually impaired.</li> </ul> <h3>High tech</h3> <p>High tech vision aids can be useful for older students once they need to do a lot of reading.</p> <ul> <li>Software programs (for example, JAWS and ZOOMTEXT) can help increase the size of icons, cursor and fonts when using the computer.</li> <li>Computerized dictation programs.</li> <li>Video cameras that bring images closer and can attach to a laptop computer.</li> </ul><h2>Driving</h2> <p>Some people with albinism can drive, but most cannot. Ask your child's eye doctor if they have the minimum visual acuity needed to drive. The minimum VA to get a driver's license in Ontario is at least 20/50 in their best eye (measured with glasses).</p><h2>Support</h2> <strong>National Organization for Albinism and Hypopigmentation (NOAH)<a href="http://www.albinism.org/">www.albinism.org</a></strong> <p>Southern Ontario Chapter:</p> <p>Kitchener Ontario</p> <p>Contact person: Scott Gibson</p> <p>scott.gibson@albinism.org</p>Ocular albinism

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