In light of September being Albinism Awareness Month, Affinity Health, a leading provider of high-quality health cover, is raising awareness about albinism.

What is Albinism?

The word “albino” is derived from the Latin word “albus”, which means “white”. People with albinism are occasionally referred to as “albinos”, but “albinism” is the preferable term.

“Albinism is a rare congenital condition characterised by the absence of pigmentation in the skin, hair, and eyes,” says Murray Hewlett, CEO of Affinity Health.

“It affects about one in every 20,000 individuals worldwide and is especially prevalent in sub-Saharan Africa, where persons with the disorder continue to be misunderstood. Contrary to some beliefs, albinism isn’t a disease.

Instead, it is a hereditary disorder that is present at birth. It is not infectious and cannot be spread from person to person through blood transfusion, dermal contact, or via a vector (pathogen carrying organism as mosquito carries malaria).”

Because albinism inhibits melanin production, the pigment responsible for colouring skin, hair, and eyes, people with albinism typically have white or very light blonde hair and pale skin that burns readily in the sun and does not typically tan.

In addition to the health consequences of albinism (listed further in this article), there are also significant sociocultural risks. The impacts of albinism are severe in areas that associate albinism with legend and folklore, leading to stigmatisation and discrimination.

What are the Different Types of Albinism?

There are four kinds of albinism. Pigmentation levels vary based on the type of albinism a person has.

The various forms of albinism are:

Oculocutaneous albinism:

OCA, or oculocutaneous albinism, is the most prevalent form of albinism. Individuals affected by OCA have abnormally pale hair, skin, and eyes. There are seven subtypes of OCA, each resulting from mutations in one of seven genes (OCA1 to OCA7).

Ocular albinism:

Ocular albinism, or OA, is significantly less prevalent than OCA. Ocular albinism only affects the eyes. Individuals with OA typically have blue eyes. Occasionally, your irises (the pigmented portion of your eyes) may be quite pale, causing your eyes to seem red or pink. That is because the blood vessels within your eyes are visible through the iris.

Hermansky-Pudlak syndrome:

Hermansky-Pudlak syndrome, or HPS, is a form of albinism characterised by a form of OCA in addition to blood disorders, bruising problems, and lung, renal, or intestine ailments.

Chediak-Higashi syndrome:

Chediak-Higashi syndrome is a kind of albinism characterised by OCA and immunological and neurological problems.

What are the Chances of Having an Albinism Baby?

Because albinism is genetic (inherited via families) when people inherit an albinism gene from their parents, they are born with albinism. For a child to be born with oculocutaneous albinism, both parents must carry an albinism gene. The likelihood that the child will be born with albinism is one in four.

If just one parent carries the albinism gene, oculocutaneous albinism will not develop in the baby. But there is a 50% probability that they will carry the gene themselves.

How Is Albinism Diagnosed?

Your healthcare professional may examine your skin, hair, and eyes during a physical exam. Nevertheless, a genetic test will provide the most reliable results and assist identify the faulty gene. This DNA test will assist in identifying the type of albinism you have.

What is the Treatment for Albinism?

There is no cure for albinism. It would be best if you managed the condition by being vigilant about sun protection. You can protect your skin, hair and eyes by:

• Keeping away from the sun
• The use of sunglasses
• Covering oneself with sun-protective apparel
• Wearing hats
• Applying sunscreen consistently
• If you have strabismus, a surgeon may be able to rectify the condition surgically.

Can People With Albinism Live a Normal Life?

Individuals with albinism can live regular, healthy lives. Nevertheless, you should restrict your time spent outdoors owing to sun exposure. Some individuals with albinism experience social isolation as a result of the condition’s stigma. It would be helpful to seek assistance for your condition from family, friends, and therapists.

When Should I See My Healthcare Provider?

Call your healthcare provider if you develop any symptoms that cause physical discomfort. Also, call if you notice any new skin changes.

A Note From Affinity Health

Albinism is a rare genetic disorder that can afflict individuals from many areas of life. If you or a family member are suffering from the effects of albinism, contact your healthcare professional. Albinism can have significant consequences for you and your family. Your healthcare professional can assist you in navigating the different facets of living with the disease. Because albinism is a genetic disorder, people with albinism in their family tree should consider genetic counselling. For a list of support groups for albinism, click here.

About Affinity Health

Affinity Health is the leading provider of affordable medical insurance in South Africa. Members enjoy access to a network of healthcare providers. We have designed healthcare products to protect you and your family when it matters the most. We strive to give our clients peace of mind and the highest standard of service. For more information, follow us on Facebook, Twitter, and Instagram.