I Was Wondering About…{Albinisim}

A random encounter in the park sparked my curiosity for individuals with snow white hair and skin.

A few weeks ago, I bumped into two young ladies with albinism at the Royal Park and the first thought I had was “They’re so beautiful!”. I’m not sure when my first encounter with an albino occurred, but I’ve always been fascinated by them. That said, I never find out more about the condition.

But not this time.

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Source: Dailymail.com.uk

What is albinism and what causes it?

Albinism is an inherited condition caused by genetic mutations. Those with albinism possess a mutated gene that produce little to none of the pigment (melanin) that gives human skin, hair and eyes their color. For this reason, albinos tend to have light blue eyes, white hair and light skin. Since melanin is also crucial for the development of optic nerve, most albinos have to live with vision problems throughout their lives.

Now, you may have the perception that all albinos share the same symptoms. But that’s not the case. Albinism occurs on a spectrum and the condition can be mild or severe depending on which genes are mutated.


 

What are the types of albinism?

The two common types of albinism are oculocutaneous albinism (OCA) and ocular albinism (OA). While the former affects the eyes, hair and skin, the latter affects mainly the eyes. That’s why it’s common to see individuals with OA to have similar or slightly lighter hair and skin color compared to other family members.

OCA is inherited in an autosomal recessive manner. This means each unaffected parent (also known as carriers) carries one functional and one non-functional copy of the causative gene. If the couple decides to have a child, there’ll be a 25% chance that the child will be born with albinism, a 50% chance for it to be an unaffected carrier (just like the parents) and a 25% chance of being unaffected nor a carrier.

Below are four sub-types of OCA:

OCA1 – Caused by a defect in the tyrosinase enzyme. The two sub-types of OCA1 are OCA1a and OCA1b.

OCA2 – Most commonly found in Sub-Saharan Africans, African Americans and Native Americans.

OCA3 – Caused by a defect in the TYRP1 gene and those affected usually have reddish-brown skin, reddish hair and hazel or brown eyes.

OCA4 – Commonly found in East Asian descents.

 

For more details, click here.

Unlike OCA, ocular albinism is inherited in an X-linked manner. This is because the mutated gene that causes OA is located on the X chromosome. Males are more likely than females to get OA because they only have one copy of X chromosome in their sex gene. Females with one copy of the mutated gene typically don’t experience vision loss or eye abnormalities. However, they may still experience mild changes in retinal pigmentation.

According to Vision Australia, the common visual defect in OCA and OA include muscular hypoplasia (abnormality in the retina causing decreased clarity of central vision), Nystagmus (rhythmical involuntary to and fro movement of the eyes), photophobia (intolerance to bright light), refractive errors and Strabismus (turned eye).


Rare forms of albinism

  1. Hermansky-Pudlak Syndrome (HPS): Has symptoms similar to OCA and those affected also have bowel and bleeding disorders.
  2. Chediak-Higashi Syndrome (CHS): Causes a defect in the LYST gene, which produces a protein called lysosomal trafficking regulator. Since lysosomes use digestive enzymes to break down toxic substances, prevent infections and recycle old cell components, individual with CHS are highly prone to infections.
  3. Griscelli Syndrome (GS): The rarest case of albinism (there have only been 60 known cases since 1978). Individuals with GS suffer from immune and neurological problems which contribute to a life expectancy as short as ten years.

Diagnosis, treatment and support

There are two ways to diagnose albinism. One is through genetic testing (the most accurate form of diagnosis) and the other is through doctor’s evaluation or an electroretinogram test (this measures the response of the light sensitive cells in the eyes). Since albinism is a genetic disorder, treatment is fairly limited. However, preventive measures can be taken to increase these individuals’ quality of life, such as using SPF, covering up while out and about and getting regular eye and skin checkups.

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Various organizations have also been established to provide specific support to those with albinism:

  • Albinism Fellowship of Australia: Main purpose is to provide support, education and fellowship.
  • Vision Australia: Supports education, employment, an active social life and aims to equip individuals with important skills.
  • The Steve Waugh Foundation: Supports individuals between ages 0-25 years through individual grants, research and awareness campaigns.

I hope I’ve covered the questions you might have regarding albinism. Before I go, I’d like to introduce the selective few who flourished in their respective careers.

Edgar & Jonny Winters // Musicians

Shaun Ross // Model

Salum Khalfani Bar’wani // Tanzania politician

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She’s the world’s first model with albinism.

Connie Chiu // Model & Singer

 

Michael Bowman // Actor

Stephen Thompson// Model

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References
http://www.mayoclinic.org/diseases-conditions/albinism/basics/definition/con-20029935
https://www.nlm.nih.gov/medlineplus/ency/article/001479.htm
http://www.albinism.org/site/c.flKYIdOUIhJ4H/b.9253761/k.24EE/Information_Bulletin__What_is_Albinism.htm
http://www.visionaustralia.org/docs/default-source/eye-health/Fact-sheets/albinism-factsheet_v2_web-(accessible).pdf?sfvrsn=0
https://ghr.nlm.nih.gov/gene/LYST
http://www.healthline.com/health/albinism#symptoms5
http://famewatcher.com/celebrity-albinos-famous-people-albinism.html
http://albinismaustralia.org/
http://www.visionaustralia.org/
https://www.stevewaughfoundation.com.au/

Yulia Gorbachenko

I came across the highly ambitious and talented Yulia Gorbachenko while I was learning more about the fashion/beauty industry. Inspired by the talk she gave in New York City as well as her creative flair, I couldn’t resist sharing my favorites from her portfolio.

Yulia is a fashion and beauty photographer based in NYC; she holds a Master’s Degree in Digital Photography from the School of Visual Arts (SVA) in New York.

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Yulia shoots editorials for magazines including Vogue, Harper’s Bazaar, Elle, Glamour, Marie Claire.

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Her commercial clients include L’Oreal, Maybelline, Clinique, Guess, Make Up For Ever, IL MAKIAGE, ColourPop, Anastasia Beverly Hills.

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Find Yulia here:

PORTFOLIO: http://www.yuliagorbachenko.com/

INSTAGRAM: https://www.instagram.com/yuliagorbachenko/

FACEBOOK: https://www.facebook.com/yuliagorbachenko

YouTube: The talk she gave at School of Visual Arts, NYC

Featured photo by GRANT FRIEDMAN

 

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In My Handheld Device

Just sharing a few visuals I’ve gathered over time…

143IMG_20160830_173532_HDR2Lei. Suit hunting with R. Drive up to Falls Creek. Backstage // PUMA. Policemen on horse.

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Andrea fixes my hair. NGV exhibition. Night market @ Ampang, KL. Random sightings in Brunswick.

 

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Mood #052017

Signet rings, dim sum and Japan are just some of the things that have been on my mind lately.

Happy Monday! How was your weekend? Mine was pretty productive. In between work (i.e. online courses, photo editing etc.), I managed to slot in some reading, lectures, a 1.5 hour leisure run, grocery shopping, window shopping and a (long overdue) video chat with my family.

(I’m so out of touch with my brother it’s unbelievable. And we live in the same city!)

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Background sourced from zcool.com.cn.

Anne Marie Vang // Albino Twins

I’ve always thought these individuals to be unique and beautiful.

Also, I have no idea that the last time I made a moodboard was in December 2016! So here’s one for the month of May, where you’ll find my inspirations, experiences, wants, cravings, dreams and fascinations.

Layer. Stack. I can’t get signet rings out of my head. 

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Yan Yan Chan

modern legacyMicah Gianneli_Best top fashion style beauty lifestyle blogger_R

Modern Legacy // Micah Gianneli

jenny mustard dot com
Jenny Mustard’s living room.
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A bit of Swedish flair won’t hurt.
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Background sourced from themetapicture.com

Androgyny fascinates me // Hokkaido, Japan

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Blade runner cityscape sourced from TR napper

STAY HUMAN // Blade runnermowielicious dot com dim sum

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Background sourced from Collider

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ArtComesFirst Street Style

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Uniqlo U Printed Long Sleeve Shirtdress

 

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On The Street // Men’s Fashion

On the hunt for some individuality.

Hey there! How’s your Tuesday going?

Mine’s pretty good. I woke up to a cold and foggy morning and I find that exciting. It’s really rare to have Melbourne covered in a blanket of fog.

I met someone new at work today.

I had one too many slices of cake during our record week celebration.

I treated my body to some exercise, had a small dinner, a warm shower and now, this.

Yesterday, I had the urge to seek out street styles that portray the wearer’s individuality. I wanted to look at men’s fashion because the internet is saturated with metallic skirts, silk blouses, Chloe bags, block heels…

So here’s a representation of men who, in my opinion, dress to their soul’s satisfaction.

I.N.D.I.A

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Amazon India Fashion Week // Matargasht

D.E.N.M.A.R.K

Street Style during Copenhagen Fashion Week Spring Summer 2016
Copenhagen Fashion Week 2016
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Denmark street style

M.I.L.A.N

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Milan // The Sartorialist

P.A.R.I.S

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Paris // The Sartorialist
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Paris // The Sartorialist
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Paris // The Sartorialist

S.O.U.T.H A.F.R.I.C.A

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South Africa street style // Red Between The Hemlines

A.U.S.T.R.A.L.I.A

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Isaac Likes
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Isaac Likes

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What’s [Unusually] Hot? #052017

In this new monthly series, I explore trends beyond the industries I’m familiar with.

One day while I was home alone browsing through fashion blogs, I had an idea to put together a WHAT’S HOT post every month. I thought it would be beneficial as I’ll be able to stay on top of trends that stem from the industries I’m interested in (i.e. beauty, fashion, health and lifestyle).

I still think it’s a good idea as I’m writing this until it occurred to me that I do catch up with trends when I’m on social media. I guess I was just having one of those I-don’t-think-I-know-enough moments…

Then I thought to myself: wouldn’t it be interesting to discover the trends outside the industries I’m familiar with? Hence, I’ve decided to start the What’s [Unusually] Hot series. Every month, I’ll seek out things that are trending or topics that are currently being discussed in different countries.

To include all of the trends is not only tedious but will make you zone out faster than when you’re in a lecture. Therefore, what you read here has been selectively chosen by me.

Note: The following trends appear in no particular order.

 

Ebay

1. Gakken Kits

Gakken Holdings was established in Japan during the 1940s. Its initial focus was on publishing educational books and magazines but it soon expanded to include the development of teaching materials and tools for preschools, kindergartens and high schools during the 1970s.

Edison Wax Candle Cylinder Phonograph Kit

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Edo-Style Clock Kit

The Pinhole Planetarium Kit

I’ve never heard of this company before but my God, these are cool! I miss those days when children and adults would look forward to hands-on projects during their free time instead of being smitten to an electronic device.

2. Chandeliers

Things I admire or would get when I own a house…

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Epiphanots.com
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Zaha Hadid’s almost aquatic LED chandelier
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Pinterest

3. Fidget toys

4. Levi’s

Strangely enough I don’t own a pair of Levi’s jeans. These are the styles I hope to get my hands on in the future.

501 skinny jeans OLD HANGOUTS
501 Skinny Jeans OLD HANGOUTS
501 straight cut LONESOME ROAD
501 Straight Cut LONESOME ROAD

5. Baby Groot

I squeal whenever Baby Groot appears on screen. I can understand why sales has spiked for this little one.

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Amazon

6. Lies of a Real Housewife: Tell the Truth and Shame the Devil by Angela Stanton

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7. The Islamic Enlightenment: The Struggle Between Faith and Reason, 1798 to Modern Times by Christopher de Bellaigue

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8. The Cancer Revolution: A Groundbreaking Program to Reverse and Prevent Cancer by Leigh Erin Connealy

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9. Canon T6 EOS Rebel DSLR Camera

EOS Rebel T6

10. Nikon D3400 DSLR Camera

Nikon D3400 DSLR

11. XJW Mini Remote Control

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It may look like a clothes hook but it’s actually a hidden spy camera which allows you to see what’s happening when you’re not at home or at the office.

Google [Trending Searches]

U.S.

12. French election

13. Alien: Covenant

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14. Princess Diana

15. 13 Reasons Why Season 2 

Australia

16. Masterchef Australia 2017

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Daily Mail

17. MotoGP

18. NAPLAN

Malaysia

19. Liverpool

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The Sun

20. Cabotage policy 

U.K.

21. Banksy

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I hope you enjoyed the first of What’s [Unusually] Hot series. Catch you soon!

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The {Other} Interestings #4

A new month means a new list of things for you to explore.

Happy Monday! If you’re feeling the blues, feel better by getting into the right mindset. For me, it has been helpful to think of Monday as a fresh start to the week. I write out my weekly goals to give myself some form of plan and believe it or not, it usually makes me feel motivated to start the week strong.

We’re heading into mid-2017 very soon. That said, how are you doing with your goals? Are you accomplishing them or have you fallen off the bandwagon? If you’re in the latter category, don’t fret. Find a quiet place, sit down, make yourself a beverage of your choice and review the goals that you’ve made.

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Start off by identifying the things that made you lose track of your goals. Is it because you now have more important priorities? Or maybe you’re in the process of moving? Whatever it is, realize that life is ever-changing. So don’t be afraid to make changes to your goals when necessary.

You probably already know that goals are more achievable when they’re realistic and small. So how do you adapt goals to your current situation and make them realistic and small at the same time? Through trial and error, I find that the following method works best for me (I still go off-track sometimes, so you’re definitely not alone!).

  1. At the end of each month, I set aside time to review the goals I’ve set for myself in the previous month. [This allows you to tweak your goals based on your current situation]
  2. On a new page, I write down goals that I have or have not achieved. Depending on how important the goals are, I either set fewer or the same amount of goals for the month ahead. [This ensures that you create a realistic amount of goals and help keep you on the right track]
  3. I break down my “major” goals into 5 – 6 smaller weekly goals. [Achievable? Yes. Motivating? Very!]
  4. At the end of each week, I tick off goals I’ve achieved and take note of those I’ve started but need more time to finish.
  5. I then create another list of weekly goals until a new month comes around.

I personally think it’s important to set aside time to review or rethink your goals. Creating goals help you improve and become better. Imagine life without challenges or positive change. Last year, I made the mistake of setting a long list of goals at the start of the year. I eventually lost track of them and ended up feeling disappointed over my lack of achievements.

I’ve been adopting the above method in 2017 (with frequent revisions of course) and I find that it has helped me get more done in a week. However, I recommend that you take my advice with a grain of salt and do what’s best for you. Anyway, enough about goals. It’s been awhile since I shared interesting/ informative articles with you so I thought I’d do that today:

  • Remember I talked about challenging yourself? If you’re in your 20s and you’re considering a career change, this one‘s for you.
  • Do you get goosebumps when you listen to the soundtrack of LOTR, Interstellar or La-La Land? I do. But what are goosebumps and what is their purpose? Find out here.
  • Those interested in skincare and beauty would’ve heard of Glossier. Maybe it’s time to give these underrated beauty brands a chance?
  • One of my weaknesses is taking too much time to work on something and I usually don’t stop working until my bed time. I’m not proud of that but I’m trying to change. Interested in being a productive ninja? You’re welcome.
  • Lately, I’ve been thinking a lot about personal branding. Here’s something useful if you’re attempting to put yourself out there.
  • Reading the world news can be disheartening, but what if you can share the love and contribute to others in some way?
  • Here’s something fun for you quiz lovers. Click here to find out how you’d react to expectations.
  • When something as classic and stylish as the women’s shirt is deconstructed, what would it look like?
  • Science + beauty = Microfluidics
  • History of fashion is always interesting. Here’s one on ruffles.

And that is all I have for you at the moment. I hope you enjoyed reading them!

 

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