Get Support Navigating Albinism
Whether you are a new parent of a child with albinism or have albinism yourself and need to get some answers or just relate to someone, we are here for you.
Get informed: Information is power. You are your child’s best advocate. We’ve provided a lot of information throughout this site to help you get started. In addition, we recommend a wonderful book written by the ‘National Organization for Albinism and Hypopigmentation’ (NOAH) called “Raising a Child with Albinism: A Guide to the Early Years”. You can purchase this book on NOAH’s website or on Amazon.com
Get peer support: Sometimes the best medicine for a parent is to reach out to other families who have been in their shoes. We encourage you to become part of The Vision For Tomorrow Facebook Page. The National Organization for Albinism and Hypopigmentation (NOAH) is also a wonderful organization with a new parent program to match parents geographically. You can visit NOAH’s website at albinism.org or call them toll-free at 1-800-473-2310 to ask about its new parents program.
Get medical support: It is important to establish a relationship with a sensitive pediatrician who has experience with children who need extra attention or may exhibit developmental delays. Most times, your pediatrician will be the one to make qualified referrals to other medical doctors and early intervention programs. Equally as important is to establish a relationship with a pediatric ophthalmologist who has experience with albinism.
Get professional services: It is important for you to contact your county or state social service office to enroll your child in ‘Early Intervention Services’. Each state has a different agency dedicated to ensuring all children needing early services receive them. Even if you feel your child is developmentally on track, it’s important to be in contact with your local Early Intervention Services. The Center for Parent Information and Resources compiles information by state. Your pediatrician may be able to help connect you to the local agency, too, so don’t hesitate to ask about it.
Modify your environment and child’s wardrobe: Because albinism affects the pigment in the eyes, individuals with albinism generally have issues with glare and strong light sources. While indoors, try to position your child away from direct sunlight or have the light source come from behind your child. For example, rather than positioning your child’s highchair facing the window, put the highchair facing away from the window as it may be uncomfortable for your child to look into bright light. For outdoors, you will want to invest in sunglasses and hats. There are many brands available for babies and children. Please see the Links We Like section of this website for some suggestions. In addition, while sunblock is important for all children, it is more important for a child with albinism to prevent sunburns.
Stimulate your child’s vision: All babies (regardless of whether or not they have albinism) see high-contrast, simple patterns best. Try to make the areas where your child spends the most time (e.g. their crib, their car seat…) as visually interesting as possible. Buy or borrow toys that are black and white or primary colors in high contrast. Dress yourself in high contrast colors or wear lipstick or nail polish with more vivid shades. There is a wonderful book written for parents of visually impaired babies called “Wee Play in the Dark” by Kristie Smith, which contains many exercises parents can do with their visually impaired children. Once your child starts services with Early Intervention, your child’s therapist will most likely recommend activities to stimulate your child’s vision as well.
To close this section: it can be overwhelming to have your child diagnosed with a genetic condition. Our hope is that you find answers to many of your questions throughout our website and that you find hope through reading stories from families dealing with Albinism.
