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Living and Learning with Albinism

Living and Learning with Albinism. June 2011. What is Albinism?.

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Living and Learning with Albinism

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  1. Living and Learning with Albinism • June 2011

  2. What is Albinism? • A relatively rare genetic condition which results in a lack of the pigment melanin in the skin, hair and eyes, although sometimes this only affects the eyes. People with albinism have a visual impairment which cannot be corrected to normal with glasses or contact lenses.

  3. Visual Impairment • Nystagmus or an involuntary wobble of the eyes is present in almost all persons • Reduced visual acuity but usually normal visual field • Strabismus or squint which can sometimes be corrected by surgery • Pale blue or grey eyes which are photophobic

  4. Other Impacts • Sensitivity to bright sunlight means people need to take care outdoors in all weather wearing high level SPF suncream all year round • Distinctive appearance which can attract negative behaviour from other children • Self esteem and anxiety particularly during formative years

  5. Positive Strategies • Sensitisation for children, parents, teachers and other staff • Holistic assessment of the impact of the condition on learning including ergonomic factors • A mix of person centred support and technological adaptation to suit the pupil

  6. Holistic Support • Encourage mutual support through meeting others • Promote access to self advocacy support for young persons including social networks • Explore posture issues around reading and learning. Pilates or other posture focused exercise can be helpful in addition to reading stands and daylight lighting.

  7. Helpful Technology • Screen magnification software for PC or use of integrated magnification and screen reading features on Mac OSX • Electronic video magnification or apps which perform this function on a tablet or smartphone • Achieving a mix of strategies for screen magnification, larger fonts and synthetic speech across various applications

  8. Connect and Learn • Albinism Fellowship website www.albinism.org.uk • Regional face to face events and conferences See Events section of the website • Twitter and Facebook for Albinism Fellowship • Connect - Share - Aspire - Feel included

  9. Discussion Topics • Coping with your condition, how do you? • Challenging stereotypes, how do you do this? • Identity, how do we feel?

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