When it comes to albinism, there is a lot of misunderstanding and lack of knowledge surrounding the disorder, which is why it's important to provide accurate and up-to-date information.
Albinism is a genetic disorder that affects people all over the world, yet there are still many misconceptions about it because it is a rare condition, the reason it's often misunderstood or misdiagnosed.
In this blog post, we'll dive into everything albinism related and discuss some essential facts regarding this rare genetic condition to help you better understand the condition to promote understanding and acceptance.
What is albinism?
Albinism is a genetic disorder that affects an individual's skin, hair, and eyes due to a lack of melanin production in the body; which is why it's considered the rarest skin colors.
Melanin is the natural pigment responsible for the color of our skin, hair, and eyes. People with albinism have a reduced amount of melanin or none at all, resulting in lighter skin and hair and vision problems such as nearsightedness, farsightedness, and astigmatism.
It is important to note that no two cases of albinism are the same, and while some people may experience more extreme symptoms, others may have only subtle symptoms.
What causes albinism?
Albinism is caused by an inherited gene from both parents; having one gene — being a carrier — will not result in albinism. On rare occasions, albinism can be caused by a mutation in the genes responsible for melanin production.
While it is an inherited condition with physical manifestations, albinism goes far beyond cosmetics, as it can cause vision problems and skin cancer due to a lack of protective pigment in the skin.
It affects people of all ethnicities and is not associated with any particular race or culture. Although the exact prevalence rate is unknown, it has been estimated that albinism affects about one in every 20,000 people worldwide.
Regardless of the cause, albinism is a lifelong disorder that affects individuals differently, which is why understanding how to care for skin affected by albinism is essential.
Types of Albinism
The various forms of albinism are each associated with unique gene abnormalities, which cause different levels of skin, hair, and eye pigmentation.
Albinism is classified into 5 main types:
- Oculocutaneous Albinism (OCA): it's the most common type of albinism that affects the skin, hair, and eyes resulting in extremely pale skin and hair color and vision problems such as nearsightedness, farsightedness, and astigmatism.
- Ocular Albinism (OA): it only affects the eyes, resulting in lighter eye color than normal; people with Ocular Albinism usually have blue eyes, sometimes red or pink, due to visible blood vessels inside their irises.
- Hermansky-Pudlak Syndrome (HPS): it's similar to Oculocutaneous Albinism, with its primary characterization being blood disorders, bruising issues, and lung, kidney, or bowel diseases.
- Chediak-Higashi Syndrome: it's an extremely rare type of albinism that significantly impacts the immune system and causes neurological problems. Caused by a mutation in the CHS1 gene, people with this disorder have silver-colored hair and a skin hue that appears slightly grayish. In addition, their white blood cells have defects making them more vulnerable to infections.
- Griscelli Syndrome: another extremely rare form of albinism associated with unusually light skin and light silvery-gray hair in starting in infancy.
Regardless of the type of albinism an individual has, it is a must to be aware of the unique needs of the skin affected by albinism.
Symptoms of Albinism
Albinism is a genetic disorder that causes the absence or reduction of pigment in the skin, hair, and eyes.
Symptoms of albinism include:
- Little to no melanin or pigment in the skin, hair, and eyes, resulting in extremely pale and even white skin, blonde, brown, or reddish hair, and pink, light blue, green, gray, or light brown eyes.
- Patches of missing melanin or pigment on the skin.
- Photophobia, or sensitivity to light.
- Astigmatism, a type of refractive error and blurred vision caused by an imperfectly curved cornea.
- Strabismus, also known as crossed eyes.
- Nystagmus, involuntary rapid eye movements or back-and-forth movement of the eyes.
- Impaired vision or blindness.
Are there any risks associated with having albinism?
Yes, people with albinism are more susceptible to skin cancer and vision problems that may require corrective eyewear or surgery to improve vision due to their lack of melanin.
Although albinism is not a disease or disorder but simply a genetic difference, individuals with albinism are more likely to experience discrimination and/or stigma due to their physical appearance, which may cause psychological and social issues.
Therefore, it is vital to seek support from family, friends, and mental health professionals.
How is albinism diagnosed?
Albinism is typically diagnosed through a combination of genetic testing and physical examination.
The most accurate diagnosis can be made with a DNA test which helps determine which gene is mutated and what type of albinism you have.
While during the physical exam, the doctor will examine your skin, hair, and eyes to look for abnormalities that may indicate albinism.
Is there a cure for albinism?
No, there is no cure for albinism, but with proper care and support, people with albinism can live healthy and productive lives.
Are there Is there a treatment for albinism?
Although there's no cure for albinism, treatments can be used to lessen the effects and manage the symptoms associated with it.
With that being said, skin care, vision care, and lifestyle modifications are recommended for individuals living with albinism; these include:
- Wearing sunscreen with an SPF of 30 or higher, protective clothing, and eyewear to protect the skin and eyes from sun exposure and reduce sensitivity to light; here are 9 of the best skincare tips for people with albinism.
- Vision therapy to help improve eye coordination and binocular vision.
- Wear prescription glasses or contact lenses for blurred vision or astigmatism.
- Surgery to correct strabismus — crossed eyes — or nystagmus if needed; surgery on the muscles in and around the eye may help reduce nystagmus' tremors, while procedures to minimize strabismus can make it less noticeable; however, this will not improve vision.
It is important to note that albinism is a lifelong disorder; therefore, taking the necessary steps to maintain healthy skin and vision is essential.
Are there any support groups or resources available for people with albinism?
Yes, many support groups and resources are available for individuals with albinism.
- Albinism Fellowship (AF) — an international network connecting people with albinism and their families by providing resources, support, and advocacy.
- The National Organization for Albinism and Hypopigmentation (NOAH) — a nonprofit organization that provides information and resources to individuals with albinism, their families, and the professionals who work with them.
- Global Albinism Alliance (GAA) — a global network of support and advocacy organizations dedicated to improving the quality of life for people with albinism around the world.
These groups provide invaluable support to individuals living with albinism and their families, access to resources and educational materials, and help raise awareness about albinism.
While there is no cure for albinism, skin care, vision care, and lifestyle modifications can help manage and lessen the symptoms associated with it to improve quality of life. With proper care and support from family and friends, individuals with albinism can live healthy and productive lives.
Frequently Asked Questions
Albinism can be classified as a disability, due to the visual impairments associated with it.
While individuals with albinism may experience normal physical growth and development like any other person, the reduced vision caused by their condition can create significant obstacles when attempting everyday tasks which can affect their quality of life.
Those living with albinism often require specialized assistive devices, support and guidance to overcome the challenges that can arise from their condition.
That said, some individuals living with albinism may qualify for disability benefits provided by the government or private insurance companies.
The lifespan of an albino is the same as any other individual, ranging from anywhere between 70 to 90 years. However, skin cancer, blood disorders, bruising issues, and lung, kidney, or bowel diseases are major health risks associated with albinism that can reduce a person’s lifespan.
Albinos cannot dye their hair because the lack of pigment in their strands causes the dye to not hold hair dye well and fade faster than normal.
While some albinos may be able to achieve a temporary color, it won't last long and will require frequent reapplication in order to maintain an even color throughout the hair.
Not only that but the chemicals in hair dye can be damaging to their already fragile strands, leading to split ends and breakage.