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Health and Skin Care for People with Albinism

Albinism is a condition that occurs in 1 out of every 17,000 births. It is a disorder that causes a lack or absence of melanin due to a mutation of certain genes. There are two common types of albinism that affect humans. One type affects the eyes, skin and hair, and it is called oculocutaneous albinism. The second type of albinism is known as ocular albinism. As its name suggests it primarily affects the eyes. One's chances of having albinism is not increased or decreased by one's ethnicity and/or race. There are often a lot of stereotypes and misconceptions about this disorder, particularly for people with noticeable characteristics. Learning the facts about albinism will help people to better understand what a person with albinism faces in terms of health and his or her interactions with society. This is crucial for people who have the disorder, and for parents of children who are born with it.

 

Signs and Symptoms

The signs that are most often associated with albinism include a lack of pigmentation in an individual's skin, hair, and eyes; however, this is not always the case. Not everyone with this condition will have obvious physical characteristics. Typically, signs and symptoms are dependent on the particular type of albinism that a person has. People with ocular albinism are less likely to have noticeable skin and hair signs of albinism, but will develop ocular problems that are consistent with the condition. People with oculocutaneous albinism will also have ocular symptoms in addition to a lack of skin color that ranges from a complete absence of pigment to minimal changes in pigment. Additional symptoms associated with albinism include an increased susceptibility to burning from sun exposure. Hair related signs of the disorder may include hair that is completely white or lighter than average. The irises of the eyes may also be lighter and have a translucent appearance.

Vision Problems

Albinism is marked by numerous vision and eye problems. This is because of melanin and its importance when it comes to the development of parts of the eye, including the optic nerves. Because of the lack of melanin, people with albinism may have vision problems such as astigmatism or be extremely near or far sighted. Other eye problems that affect vision include strabismus, nystagmus and light sensitivity. Nystagmus means that the eye moves in a rapid back and forth motion. Strabismus refers to eyes crossing, failing to move in unison, or eyes that are unable to focus or look to the same point. The presence of one or more of these eye problems is not, however, enough to diagnose a person with albinism. They are considered symptoms of the disorder.

Health Concerns

People who have albinism are faced with an increased risk of skin cancer. This is the result of the absence, or lack of melanin in the skin. In addition to higher than average risk of skin cancer, a person with albinism will find that he or she is at a higher risk of sunburn. To reduce this health concern, SPF 30 or higher sunscreens should be worn whenever outdoors. In addition, protective attire, such as hats, long pants and long-sleeved shirts should also be worn.

Social Aspects of Albinism

Perhaps one of the greatest impacts that albinism has on an individual is social in nature. People with noticeable physical characteristics such as white hair and skin may draw unwanted attention and negative commentary or teasing. People with certain eye conditions, such as nystagmus, may also be subject to the unwanted and potentially negative attentions of others. These encounters can affect people on an emotional level to varying degrees, and is often worse for children. An adult or child with albinism may develop a poor self-image or low self-esteem. They may feel uncomfortable or nervous in social settings and prefer to isolate themselves from the presence of others. To help cope, a person may seek out support groups through organizations such as the National Organization for Albinism and Hypopigmentation, or NOAH. The encouragement and support of families and friends can also go a long way toward making a person feel more confident about interacting with others.

Resources:

  • The National Organization for Albinism and Hypopigmentation: This is the home page for NOAH. On this website readers will find in-depth information about albinism as well as support related info.
  • DermNet NZ - Albinism: General facts about albinism can be found on this page. Information includes types of albinism, who is at risk, and problems that are associated with it.
  • Mayo Clinic - Albinism Guide: The Mayo Clinic page on albinism. From this introductory page readers can go to other pages regarding the symptoms, causes, and treatment associated with albinism.
  • Eye Features in Albinism: Click this link to learn common eye problems that are associated with albinism. Conditions and definitions are listed. This information is on a web page for the University of Minnesota.
  • Albinism Fellowship: This is a website of an organization that provides information about albinism and also support to those with the condition.
  • Genetic and Rare Disease Information Center - Albinism: This page holds information about albinism, such as what it is and how it is inherited.
  • Albinism – Overview: This link opens the albinism page on the University of Maryland Medical Center website. In addition to basic information about albinism, it also provides the reader with information such as the definition, causes and risk factors; it also provides links to symptoms, treatments and prevention.
  • Albinism Fact Sheet: This link opens a PDF document on albinism. Information includes statistics, characteristics, causes, types and additional facts.
  • Albinism: On this page readers may review information about the characteristics, genetics and treatment options associated with albinism. The link is to the Albinism page on the University of Arizona Hereditary Ocular Disease website.
  • NYU Langone Medical Center - Albinism: On this page the reader will learn the definition of albinism. In addition, he or she may also read about causes, risk factors, symptoms, diagnosis, and treatment.
  • NHS Choices: Albinism: On this NHS web page readers are given an overview of albinism. The overview includes information about the disorder's symptoms, causes, diagnosis, and treatment.
  • The Vision for Tomorrow Foundation: Albinism - Frequently asked Questions: By clicking on this link readers are taken to a list of thirty-four questions and answers regarding albinism.
  • TeensHealth - Albinism: This article provides a detailed review about understanding albinism, causes, problems with eyesight, skin precautions, and treatment. While it is geared toward teenagers, the information is also valuable for adults who are looking for albinism information.
  • About Kids Health - Albinism and Genetics: This page gives readers information about oculocutaneous albinism and ocular albinism. The difference between the two is explained as is who is most affected by them.
  • BBC Health - Albinism: On this BBC Health page readers learn about the causes and symptoms of albinism. They will also learn who is affected and what treatments are available for the condition.
  • American Association for Pediatric Ophthalmology and Strabismus - Albinism: This link takes readers to basic information on albinism. In addition to the basics, lifestyle adjustments, useful optical aids, and non-medical approaches are discussed.
  • Who is at Risk for Albinism?: This page provides an explanation about who is at risk for albinism and why. Readers will also learn how often albinism occurs.
  • The New York Times Health Guide – Albinism: This is a guide that informs readers about various aspects of albinism. In addition, readers will learn about support groups and the outlook for the condition.
  • HPS Characteristics - Albinism: Clicking on this link will lead to a page that discusses the type of albinism that is associated with Hermansky-Pudlak Syndrome.
  • Winchester Health Library Information on Albinism: This web page offers an overview on general information about albinism.
  • Albinism – Treatment and Management: Medical Care: A list of aids and potential medical options that may help people living with albinism.
  • CNN Health- Albinism: This link opens to a fact sheet on albinism. Drop-down boxes on the page provide the reader with detailed information on specific albinism topics.
  • Fighting the Stigma of Albinism: This is an ABC News article that is an in-depth discussion on the stigma and social problems associated with albinism.
  • Social and Emotional Aspects of Albinism: This is a web document that explores the social aspects of having albinism. The article is broken down into four influences.
  • Discovery Health - How Albinism Works: Albinism and the Eyes: This article explains the types of eye problems that are commonly associated with albinism. It also explains why people with albinism have eye problems.
By Katie Phillips
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