Albinism is one of a number of visible skin disorders that can create unique mental health challenges. In this article, we’ll explore some of these skin disorders, their potential psychological impact, and coping strategies and resources that support mental health.
Albinism and Other Visible Skin Disorders
Albinism is a genetic condition characterized by a deficiency of melanin pigment in the skin, hair, and eyes. People with albinism have ashen skin, grayish-white hair, and light-colored eyes. Due to the lack of melanin in their skin, they are also at an increased risk for severe sunburn, skin cancer, and vision problems.
The global rate of albinism is about one in 20,000. However, the U.S. has a lower rate of albinism, with one in every 37,000 people carrying genetic mutations responsible for albinism.
Albinism is usually diagnosed through clinical evaluation, family history analysis, and tests performed by ophthalmologists and dermatologists soon after birth. Additional assessments like genetic testing may confirm the diagnosis and identify the specific gene mutations. Albinism presents an autosomal recessive pattern of inheritance that requires both parents to carry one copy of the albinism gene. When the parents pass this gene to their child, the child inherits two copies, one from each parent.
Children and adults with albinism or another visible skin condition not only contend with physical challenges but also face stigma resulting from societal attitudes regarding their appearance. Similar to the way disabled individuals are treated, people with albinism also contend with discrimination, psychological distress, and social exclusion every day.
Other skin conditions that cause visible blemishes include:
Vitiligo: A chronic autoimmune disorder usually developing before age 20, vitiligo produces patches of skin that have lost pigmentation. These skin patches are significantly lighter in color than the person’s normal skin. .
Psoriasis: An autoimmune condition involving the accelerated accumulation of dead skin cells. Areas where skin cells amass become bright red, scaly, itchy, and painful.
Atopic Dermatitis (Eczema): A chronic inflammatory skin condition characterized by red, dry, itchy, skin, atopic dermatitis generates tiny blisters that ooze fluid when broken.
Rosacea: Primarily affecting the face, especially the cheeks and nose, rosacea causes redness, pimples, burning sensations, and visible blood vessels. Common rosacea triggers include sunlight, alcohol, stress, and hot weather.
Lichen Planus: An inflammatory condition affecting the skin, nails, and mucous membranes, lichen planus is characterized by purple, itchy bumps with flat tops. About one in 100 people worldwide will develop lichen planus at some point.
What is the Psychological Impact of Living With Visible Skin Conditions?
Prejudice against physically disfigured individuals may arise from a subconsciously triggered bias involving different brain regions. Attractive people with healthy skin activate brain cells associated with social and emotional processing. Studies show that people without visible disfigurements are perceived as competent, trustworthy, and approachable by others. In addition, brain scans reveal reduced activity in the anterior insular cortex, the area primary to processing empathy, when study subjects view pictures of disfigured or otherwise “unattractive” people.
Being discriminated against for albinism and skin-related disorders can increase feelings of isolation, loneliness, and low self-esteem. Exclusion from social activities or feeling “different” due to one’s appearance is particularly difficult for children with albinism who grapple to make friends or feel accepted by their peers.
While adults with albinism may not encounter the level of stigma experienced by children with albinism, they inevitably struggle with employment and workplace discrimination and the health problems related to albinism.
Anxiety, depression, low self-esteem, body image issues, PTSD, social isolation, and identity issues can all stem from societal perceptions and experiences related to albinism and other visible skin disorders. Body image disorders like body dysmorphic disorder (BDD) cause people to focus on defects in their appearance obsessively. Albinism and BDD may lead to someone choosing unsafe drugs or surgical procedures in an attempt to darken their skin and hair. Major depression can lead to a body dysmorphic disorder called binge eating disorder (BED), where recurring episodes of uncontrolled overeating promote weight gain and medical problems related to obesity.
Coping Strategies for Managing Social Stigma and Discrimination
In addition to seeking counseling when mental health problems become overwhelming, here are some great ways to help cope with discrimination as someone with albinism:
- Reach out to trusted friends, family members, therapists, or support groups to talk about your feelings. Discussing feelings improves mental health through emotional expression, understanding, acceptance, and coping strategies.
- Challenge negative thinking by reframing negative thoughts into empowering thoughts. For example, if you are contemplating obstacles that you consider too challenging, replace those thoughts with: “Obstacles are simply opportunities to develop my resilience and problem-solving skills. There are always alternatives, and I will find or create them.”
- Educate others about your skin condition. Myths and stereotypical beliefs often fuel discriminatory words and actions. Be calm and informative when enlightening people about albinism.
- Research successful people with albinism. It is inspiring and liberating to see that others with albinism can thrive and stand out in society. Rock star Johnny Winter, American model Shaun Ross, and activist model Thando Hopa are a few famous people with albinism.
- Learn about your civil rights and prepare to advocate for yourself when you experience discrimination.
- Express yourself through writing, music, drawing, photography, or other artistic method. Creating facilitates the processing of emotions, reduces stress, helps you gain insight into powerful emotions, and enhances self-esteem.
- Find online albinism communities and share your experiences with others who have encountered discrimination and stigma from society.
- Use social media platforms to raise awareness and dispel myths about albinism in an informative, optimistic voice.
Tips for Managing Practical Issues
- Avoid sun damage by wearing protective clothing, hats with wide brims, and high-SPF sunscreen when going outside. The lack of melanin in the skin increases the risk of skin cancer and sunburn with blistering.
- Get an eye exam every six months. People with albinism commonly develop one or more of the following eye problems: involuntary, rapid eye movements caused by nystagmus can affect vision clarity and stability; misalignment of the eyes (strabismus) may impair depth perception and binocular vision; and refractive errors such as nearsightedness (myopia) or farsightedness (hyperopia).
- Comprehensive skin examinations by dermatologists specializing in albinism can detect signs of skin cancer in its early stages.
Accessing Support Networks and Resources for Mental Well-Being
Below are some support networks and resources for mental well-being:
- The National Organization for Albinism and Hypopigmentation (NOAH) – The NOAH Albinism Advocacy and Awareness Program offers information and support to individuals with albinism, their families, and the public, advocating for their advancement. This program is divided into Discrimination Advocacy, Educational Advocacy, International Albinism Awareness Day, and Advocacy Policy Research.
- Beyond Suncare – A global organization providing employment resources and medical assistance for people with albinism
- National Alliance on Mental Illness (NAMI) – A comprehensive directory of phone numbers to call for help with depression, disability rights, emotional disorders, and many other needs.
- The Albinism Alliance Group – An online support network offering support and information about activities related to albinism advocacy.
