What is Albinism?
Albinism is an inherited condition. People with albinism have little or no melanin, which is a chemical that colors our skin, eyes and hair. Therefore, people with albinism lack pigmentation in the skin, eyes and hair. Albinism affects people of all races and ethnicities and is much more common than you may think. In fact, one out of every 17,000 people worldwide has some form of albinism. In some populations, it occurs in one out of every 200 births.
Most forms of albinism are recessive, which means that a child inherits one abnormal gene from each parent. Most children with albinism are born to parents with normal pigmentation. These parents — like one in every 75 people — are carriers for albinism. A carrier is someone who has one abnormal gene and one that functions normally. Because the functional gene overrides the abnormal one, these people do not have albinism themselves. However, they are still able to pass the abnormal gene on to their child.
Although people with albinism always have problems with vision, the degree varies greatly. Some are legally blind, while others have vision that is good enough to drive a car. Most are able to read without using Braille.
In addition to the impact that albinism has on vision, individuals with albinism should be aware of other non-ocular concerns related to albinism:
- Skin: People with albinism lack sufficient amounts of melanin, the chemical which also protects your skin from the sun. As a result, they are prone to sunburn and skin cancer. In areas of the world where proper sunscreen is not available, there is an 80% fatality rate. In the United States, people with OA and OCA albinism have a normal life span. In the developed world, many skin cancers are prevented by using proper sunscreen and protective clothing. People with albinism do not need to stay inside or sit in the dark. With proper protection, they can participate in most activities, including a trip to the beach.
- There are other medical problems associated with HPS, Chediak-Higashi Syndrome and Griscelli Syndrome as described in the ‘Genetics and Types of Albinism‘ section of this website.
Newly diagnosed with Albinism?
Albinism can be diagnosed by an experienced ophthalmologist or optometrist with a simple eye exam. There are confirmatory tests, such as genetic testing, but they are not yet perfected. For more information on genetic testing, contact a qualified genetic counselor. Genetic counselors are generally affiliated with universities and/or children’s hospitals. If a diagnosis is unclear, a special vision test, known as a VEP (Visual Evoked Potential), can sometimes be used to rule out a diagnosis of albinism.
If you are reading this section of our website, you are most likely the parent of a child with albinism. Congratulations on the birth of your wonderful child! Although your journey as a parent will be different than what you expected, rest assured that your journey will be equally as joyful and wondrous. Before you begin reading about what to expect, we hope you that you will find comfort in these words: you are not alone. There are many families dealing with albinism and multiple organizations that support albinism.
There are many different types of albinism, and depending on which type of albinism your child has, the diagnosis may have come at varying ages. Regardless of when you found out, the first few days following the diagnosis are often the hardest. You may be confused, sad, scared or even angry to find out that your child has a genetic condition. Some people accept the diagnosis and immediately move along to find what to expect next. Others experience the classic stages of grief. Whatever your response to the diagnosis, please know that there is no ‘right way’ to react and you should not feel guilty about being sad or angry. Be kind to yourself as you work your way through your emotions. Also, know that many times one parent reacts differently than the other. Try to be patient with one another.
As you read through this website, we hope you see your child as your child first and not see ‘albinism’ first. Your child is the same child you fell in love with. Your dreams are the same. The journey to reach those dreams may just be a little different than you expected.
So, where do you go from here? Broadly speaking, there are a few things you can do early in your child’s life to make the journey easier for you and your child in the next section.
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. You can email one of our directors, Susan Ballis at [email protected]. Susan has a daughter with albinism. We also encourage you to become part of The Vision For Tomorrow Facebook Page. It is an active community of individuals who ask questions and share experiences. In addition, we continuously post any information which may be of interest to individuals living with albinism. Another alternative for support is the National Organization for Albinism and Hypopigmentation (NOAH). NOAH is also a wonderful organization with a ‘Rapid Responder 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 their Rapid Responder 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.