Albinism 101

“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 Facts:

  • 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……..

Nash with glasses and hat

Feature image – Nash sitting in the ergo baby wearing his black Babybanz and sunhat. The image is in black and white.

 

Our Story

A good friend encouraged me to start writing about my experiences with Nash and Albinism. It has taken me a whole year to take the plunge and start this blog. Sleep deprivation, playing candy land 5 million times, acting out various superhero capers and trying to keep the baby alive took up all of my energy. I will warn you I am by no means an accomplished writer. In fact, my husband loves to correct my grammar on a daily basis, it has become a thing in our marriage. I text him, he texts back highlighting something I wrote incorrectly and so on. Subconsciously I probably just do it on purpose now to annoy him. Life wouldn’t be fun if you can’t irritate your husband a little bit.

When Nash was born we were shocked by the masses of blonde hair, I had always wanted a blonde haired baby but I being of half Asian ethnicity knew this to be a dream. My husband and I both mentioned to each other that perhaps our son was Albino (this is the word that was used and I am repeating it here, but I do know many find it to be a derogatory term that has negative connotations).  The doctors and nurses disregarded our comments and we went on to assume that his coloring came from his father’s side.

After one month I suspected something was not right. For some reason, I had completely disregarded Albinism primarily due to my ignorance about the condition. I thought Nash was blind I was convinced of it. He wouldn’t look up at me as I breastfed him and even though it was still early days I knew he wasn’t tracking objects. At first family and friends told me to wait that it was too soon but by month two they too noticed and encouraged me to go see his pediatrician. Nash had by this point developed Nystagmus and involuntary movement of the eyes (this will never go away but depending on how far he is looking I notice it increasing and decreasing).

The first thing my pediatrician told me was that he should have a brain scan – my worst nightmares from good old ‘Dr. Google’ were coming true. I can’t be sure if she decided to use ‘Dr. Google’ also but she downgraded her plan of action to Ophthalmologist first.  I know you’re going to do it but if you ever think there is something wrong with your child don’t Google, Bing, etc. it is like Alice going down the Rabbit hole once you are in there it is hard to get out.

We made it to the Ophthalmologist where we were almost relieved to find out that he had Albinism. Of all the things I had imagined this was by far the best outcome. We were nervous and scared as to what this meant for Nash but we knew he could see, just not very well. His life would definitely be more challenging but lots of people lead challenging lives and who said life would be easy for anyone, not just Nash. He was unofficially diagnosed with Ocular Albinism although his diagnosis was incorrect (more on this another time). He has now been diagnosed with Oculocutaneous Albinism OCA2, unless we decide to do genetic testing we cannot 100% confirm this diagnosis. We have decided as a family that the testing won’t change much, it would narrow down the type of Albinism but it won’t change the outcome of his condition or how to treat it.

Nash has really been a breath of fresh air to our little family and has surprised me in so many ways. Nash is happy to be with anyone and loves to get in amongst the older kids, he started practicing planking at 4 months ( I knew there would be another yogi in the family) and was crawling by 7 months. He is such a happy little guy. I have no idea what the future holds for him but I know we will try our hardest to make it a bright one.