Brief description of vitiligo and albinism
Albinism is a rare condition characterized by little or no melanin production in the human body. Melanin is a natural substance in the body that gives color to your hair, skin, and iris of your eyes. In the United States, prevalence of albinism is estimated to be 1 in 17,000 to 1 in 20,000, with ample variations across ethnic groups.
Most individuals with albinism have pale skin that is very sensitive to sun exposure, eye conditions, and easily get sunburn; which t can increase the risk of developing skin cancer and sun damage-related thickening of the skin.
Vitiligo occurs when cells that produce melanin die or stop functioning, and affects people of all skin types, although it may be more noticeable in people with darker skin tone. Although the condition is not life-threatening or contagious, it can cause distress and self consciousness to the affected individual. While treatment can help, this condition is not curable.
Social impact
One main social issue that may face individuals with pigmentation problems is discrimination. For example, using the term “albino” when addressing an individual with albinism is demeaning and can often have a negative impact on those with the condition and cause them to be self conscious about the way they look. Other social issues that both individuals with vitiligo and albinism may experience are bullying, teasing or probing questions about their appearance, eyewear, or visual aid devices.
The negative effects are commonly psychological, such as the loss of self-esteem among many individuals who are affected, causing them to isolate, feel embarrassed or shameful about their appearance, lose their identity, lack self-confidence, have emotional distress, be self-conscious, and develop depression. The stigmatization has caused many to abandon their dreams and refuse to voice their feelings. The deeply negative impact on self-esteem, perception of self-worthiness and beauty, transcends race, age, sex, and socioeconomic status.
Massé’s role
While many individuals with albinism and vitiligo face a society that tends to judge them badly because of their physical appearance, social acceptance is a vital aspect in the life of these individuals and a key contributor to a failure of enjoyment of life. To this end, Massé is geared to promote the inclusion of individuals suffering from albinism and vitiligo by raising awareness and improving the quality of life of these marginalized groups.
To ensure that affected adults, youth, and their families have sufficient information about albinism and vitiligo, as well as the support needed to thrive in society, Massé aims to develop educational activities intending to educate the community, as well as the affected individuals. It is our belief at Massé that in order to be accepted, one needs to accept oneself first. Thus, the educational activities of Massé are geared to facilitate the full participation of young and adult individuals with albinism and vitiligo in society, and allow them the opportunity to express themselves and inform the community of their conditions. Training sessions and seminars will be used to facilitate this goal.
For instance, using the term “person with albinism” is preferred to avoid the stigma of other terms. The social benefits of Massé’s programs aim to empower the affected individuals and encourage self-acceptance in order to motivate a community where acceptance promotes a peaceful enjoyment of life for all.
Reference
https://www.mayoclinic.org/diseases-conditions/albinism/symptoms-causes/syc-20369184
https://www.healthline.com/health/albinism
https://medlineplus.gov/ency/article/001479.htm
https://my.clevelandclinic.org/health/diseases/12419-vitiligo
https://www.aad.org/public/diseases/a-z/vitiligo-overview
https://www.niams.nih.gov/health-topics/vitiligo
