Jumat, 14 Oktober 2016

Waardenburg Syndrome and I

I would never know that I actually have waardenburg syndrome until I meet Dan Brubaker last 2015. Waardenburg syndrome is a group of genetic disorders which is evident from birth (congenital). The syndrome causes deafness, change in color of skin, hair and eye. With clothes full long sleeve and long pants and completed hijab, I truly enthusiast asked him about how could he know that I have it.

" Waardenburg Syndrome – Symptoms "

Here are the key identifiable symptoms –
Pale blue eyes or colors of both the eyes does not match
Wide set eyes
Early graying of hair or white patch of hair
Cleft lip
Slight decrease in intellectual function
Pale color skin
Difficulty completely straightening joints
Facial abnormalities

I was born to be the second Deaf generation in mother's family. My mother is Deaf since born and my father have became Deaf because he was getting highest fever then coma when he were still a kid. We sometimes are happy of being Deaf family, we also sometimes blame each other because Deaf. During 21 years in my life, I didn't understand why some people saw us with sight full of pity yet. Thus, some more friends bullied me with weird labels like monkey, the most ugly girl, etc because my fused eyebrows. Guess what! I chose for looking away and continued for focus on my activity. Reverse with a condition at home, my father complained that why I didn't get the same beautiful eyes color like mother? I felt so............... unmood. 

I was tired of looking find the best answer

Talking with Dan, I felt the enlightenment day in the front of me. I started browsing and browsing about waardenburg syndrome. Eyes sparkled and smile widely. I was so .. HAPPY  that I got the valuable lesson which related with myself. Early in 2016, I started proudly acknowledge that I am different because I am the one person with waardenburg syndrome. I was also explaining what's the meaning of it. 

However, my mother didn't accept it yet

In Indonesia, no one recognise waardenburg syndrome even though some of them have it too.  That is reason why my mother was worried of what is going on my movement. I arranged good time for talking with mother privately at comfortable place. I expressed my feeling towards waardenburg syndrome. It doesn't bother my life. Just need acceptance of its in ourselves. Like Deaf, waardenburg syndrome has to presented to society. Maa shaa Allah my mother shouldn't take long time, she asked me that would I mind spelling again it. ( laugh out loudly ). 

Next ?

I have a boy best friend, Cristo who I have known for 18 years have left Indonesia to go to New York to continue his education for his Bachelor Social of Biomedical at Rochester Institute of Technology University already, you can look find him here : https://www.facebook.com/czheri?ref=ts&fref=ts . He was let me to see his college life through keep video-calling. Because it, I was looking find a friend of him who has best friend with waardenburg syndrome too. Aw yeah! I am keen in learning more about waardenburg syndrome.

I can't wait for ask anything to them. Wish me luck LOL 

Waardenburg syndrome

1 komentar:

Unknown mengatakan...

Hii! First of all, I wanna let you know that your post is awesome and it makes me smile! I love how you embrace your Waardenburg syndrome so proudly! :) I'm proud too! May I talk to you in emails? Let me know if I may and I'll try to contact you through email :) and I'm an Indonesian too^^