Life with Marfan Syndrome


When I was 3 years old, I was diagnosed with the genetic disorder, Marfan Syndrome. This affects the connective tissue in ones body.

You could say my features are typical of someone with this syndrome.

My arms, legs and fingers are elongated (I'm taller than the average Asian). My body type is really thin, and I have other symptomatic characteristics as well.

When I was teenager, my lungs suddenly collapsed and I had surgery on both.

The symptom which affects me most is my vision. I've had blurry vision since childhood, as I have dislocated lenses in both eyes.

My glasses are at their maximum prescription (and thickness)! I have contact lenses too, but still, they don't fix my vision.

If I wear eyeglasses all the time, I feel that my brain never wakes up!

I usually wear contact lenses in public, which are mainly designed for long distance.

When I work on my art, I wear glasses. But with  glasses, it's so incredibly difficult to see details. So, I alternate between using my glasses and no corrective lenses at all. But this means I will be macro nearsighted. :D





It's always been challenging for me to live through these eyes. I would like to post about my life with Marfan Syndrome in the future.
Important:
 

For more information about Marfan Syndrome, you can visit The Marfan Foundation website here, because awareness of this syndrome is important for everyone; especially for those who may have the syndrome but may not realize it yet. Without proper diagnosis, it can be life threatening.

2 comments:

  1. is unbelievable to me how a person with so much damages of the eye vision can draw so beautifully, so vitally, and so spiritually. When I look at Mino's art work on the animated Nature it is indeed an Animated drawing captured at one moment of the motion, at one moment of a smiling face.

    I would like my female causing who use to be a painter to see Mino's art, to read her story, get ashamed that she gave painting long time ago, and become motivated again for drawing and painting.

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  2. It is so inspirational to know that such an Artist like Mino exists. I admire her courage, determination and strong will to continue drawing and make her follows happy with such a beautiful, vital, spiritually happy and optimistic Art work.

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