“What the mind doesn’t understand, it worships or fears” – Alice Walker
In many parts of Africa, people with Albinism are butchered for body parts due to age-old superstitions that continue to feed into myths that people with Albinism are ghosts, sorcerers or demons. Now, this is an extreme view on Albinism not necessarily seen here in the US. Still, I have witnessed from various Facebook groups parents sharing stories of people making unnecessary ignorant comments towards their children. Maybe if we all just had a little more understanding of what it really means to have Albinism we can slowly dispel any myths surrounding it.
In light of this, I wanted to look at the bare facts of exactly what is Albinism. Before having Nash I really had only a vague understanding of what it meant to be a person living with Albinism even now I only know from looking in not looking out. I, like many people out there, had this misconception that it meant a person had red eyes and white hair, boy was I wrong.
I could probably write an essay with all the information there is out there, however, I decided to pick out the basic facts about how Albinism affects an individual.
- Albinism is an inherited genetic condition that reduces the amount of melanin pigment formed in the skin, hair, and/or eyes.
- It occurs in all racial and ethnic groups in the world.
- In the US approximately one in 18,000 to 20,000 people has some type of Albinism and most of these people have blue/hazel or brown eyes.
- The appearance of red eyes is due to certain lighting conditions that make the blood vessels at the back of the eye visible.
- There are several different types of Albinism:
- Ocular Albinism – it is rare and involves only the eyes whilst the skin and hair may appear similar or slightly lighter than other family members.
- Oculocutaneous Albinism (OCA) – effects eyes, hair and skin and today there are approximately 7 other OCA classifications and 3 other serious conditions that are associated with Albinism that I won’t go into here.
The biggest realization for me was that people with Albinism are visually impaired that is why there was such a disconnect with me when addressing Nash’s lack of vision. People with albinism have vision problems not correctable with eyeglasses, they have low vision and are considered legally blind. It is the abnormal development of the retina and abnormal patterns of nerve connection between the eye and brain that cause these problems.
Eye problems consist of:
- Nystagmus: Regular horizontal back and forth movement of the eyes.
- Strabismus: Muscle imbalance of the eyes, crossed eyes, lazy eye or an eye that deviates outward.
- Photophobia: A sensitivity to light.
- Foveal Hypoplasia: The retina does not develop normally before birth and in infancy.
- Optic Nerve misrouting: The nerve signals from the brain do not follow the usual nerve routes.
Most people with Albinism have extremely fair skin and must wear sunscreen, hats and protective eyewear to limit the exposure to light and UV rays. I have hats, sunscreen and sunglasses stashed everywhere although on some occasions, usually when the sun is at its hottest and brightest, I somehow can’t find any of them. I try not to overreact and run inside like Nash is going to spontaneously combust although I do know it is incredibly uncomfortable for him visually. As a family, we are extremely lucky to live in a country where all of the sunscreens, hats, sunglasses and dermatologist offices are accessible and affordable. Despite photophobia and the fair skin we plan to be at the pool most the summer (with protective gear of course), when you live in Houston where it feels like somebody has put you under a sunbed and wrapped you up in clingfilm (Saran Wrap to you Americans) for half of the year, there is no better place to be . I am hoping when Nash realizes how beneficial his hat and sunglasses are he will stop ripping them off his head every 5 seconds. I hear like with anything in life perseverance is key.
On that note, I leave you with this little dude……..
Feature image – Nash sitting in the ergo baby wearing his black Babybanz and sunhat. The image is in black and white.