Children’s Book Raises Albinism Awareness

What’s a great way to spark an understanding of diversity and the complex and beautiful differences between different people? A children’s book! Children’s books are often designed to both tell a story and teach a lesson, making them a fantastic way to prepare children to learn about all of the things which make us unique. According to WBTV, one mother from Indian Land, South Carolina, Megan Cauthen, is writing a children’s book to raise Albinism awareness.

Albinism

So what exactly is albinism? Albinism consists of a group of inherited (genetic) disorders which affect melanin production. Normally, our bodies produce melanin, and the amount we have shapes the color of our hair, skin, and eyes. But for those with albinism, the body produces little – or no – melanin. Although many people with albinism have very pale skin and white or light blonde hair, some people may have slightly darker hair depending on how much melanin they produce. OCA1 to OCA7 gene mutations cause oculocutaneous albinism, while X-linked gene mutations cause the rarer ocular form. Signs and characteristics include:

  • Sun exposure sensitivity
  • Increased skin cancer risk
  • Pale or pinkish skin which can develop freckles or moles through sun exposure
  • Photophobia (eye sensitivity to light)
  • Astigmatism and blurred vision
  • Poor eyesight (extreme nearsightedness or farsightedness)
  • Nystagmus (rapid and involuntary eye movements)

Megan’s Story

Both Megan and her brother, Marty, were born with albinism and faced certain challenges every day. For example, growing up, Megan was teased and called ugly. She even began questioning her Black identity as kids cruelly called her names like “Casper.” Then, after having her daughter Kaleigh, who does not have albinism, even Kaleigh began getting teased, with people joking that Megan was not her mother.

But this prompted Megan to make a change and write a book to raise awareness. Further, she hoped that her book could explain what albinism was and make it more approachable for other children. Her book, Nellie & Ollie: Meeting a Friend Like Me, raises awareness using a story of a child and squirrel, both of whom have albinism. When the book is released, on October 6, 2021, Megan really hopes that this will teach those with this condition that they are beautiful and perfect as they are, while simultaneously teaching others that:

“We are all human and…should be treated with respect.”

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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