Stacey and Jason Chappell love their large family; there’s nothing they enjoy more than spending time with their five children, sometimes even going on fun vacations. But Stacey feels nonplussed when strangers pass judgment on three of her children, who have albinism. In an article in Tyla, Stacey explains that people sometimes make rude or condemnatory comments about Jay, Leon-James, and Amelia Grace. These comments revolve around the way the children look or the glasses that they have to wear; albinism can cause visual impairments.
In part, Stacey understands the lack of awareness around albinism. Before their children were diagnosed, neither Jason nor Stacey knew anything about the condition. But Stacey asks for people to extend kindness, and work to learn about the condition, rather than simply assume things about her children.
Outside of raising awareness, Stacey and Jason are working to ensure that their children live the fullest and happiest life possible. They make sure that their children always wear sunscreen, have connected with Guide Dogs, and installed blackout curtains to protect their children’s sensitive skin. In the end, they just want to create a more empathetic and understanding world—a mission we definitely support!
What is Albinism?: An Overview
Albinism refers to a group of inherited disorders characterized by little to no melanin production. Melanin plays a role in the color of your skin, eyes, and hair. There are different albinism subtypes depending on the specific mutated gene. Symptoms and characteristics of albinism include nystagmus (involuntary eye movements), extreme near- or farsightedness, light sensitivity (photophobia), white to brown hair, light blue to brown eyes, and pinkish skin that easily develops freckles, moles, and lentigines when exposed to the sun. People with albinism are also more likely to develop skin cancer. Treatment options include avoiding sun exposure, various therapies for eye issues, and frequent eye and skin monitoring. If you have albinism, your care team will most likely be multidisciplinary and include your primary care physician (PCP), dermatologists, and ophthalmologists.
