Live happy as "Alien" and "Putera Lilin".
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Additional Note: The uses of the term "Putera Lilin" and "Alien" in my story is just to show my openness and willingness to start talking about Ectodermal Dysplasias to common people. Besides I want to show the positivity must start from yourself first and don't take too serious with a people "LABEL"
Salam sejahtera, my stories will be mixed in Malay and English. because I'm an ESL learner and maybe my grammar and word may contain a grammatical error. Before I started wrote my stories, I love to tell a bit about things which currently I'm doing,
Currently, I live and work in Kuala Lumpur. I also one of Youth Advocate for Malaysia Rare Disease Society which fight to create better opportunities and equal right for PWD (People-with-Disability) and RD(Rare Disease) in term of education, accessibility, career, and public acceptance.
My early life. I was born in Hospital Besar Ipoh, located in Northern state in Malaysia (currently, Hospital Raja Permaisuri Bainun), in December 1990. I born prematurely one month early, based on my mom's story, I born in a normal way, but the doctor put me in the incubator for some days to stabilize my condition.
My parents noticed my condition different from other normal newborns after my grandmother finds always crying because of heat and notice my body temperature too high for normal newborns. To calm and cool down my body temperature, my grandmother applies the Malay traditional tips which using the extraction of tamarind water. ( I can't verify the scientific or any medical effect.., please study first), the other symptoms of H.E.D start appear when my tooth bud is delay development, after nearly 2 years, my tooth bud still not growing, when looking this abnormal growing, my parent refers to the family doctor and advises my parent to pediatricians to learn and diagnosed the root cause this delayed development.
3 years later, after a few doctor appointments, observation, and evaluation, I have been confirmed by local Paediatrics that I have HED (Hypohidrotic ectodermal dysplasia). The diagnosis result has clarified about my intolerance to heat environment condition and dealy tooth growth. Still clear in my mind, is one of the session doctors check my skin and ask me to open my mouth to check my teeth. My parents that most consents at that time are my intellectual development, but the doctor that diagnosed me confirmed my intellectual development not affected.
Yeah, the doctor opinion about my condition is correct, my childhood is happy like other kids, which I play and learn like a normal kid.. (apa yang kanak-kanak lain main, saya main, pokok dipanjat, longkang diranduk, tanah di gali, basikal dikayuh dan pelbagai lagi semuanya saya buat), I school like a normal kid, my education journey starts from kindergarten at 5 years old, and completed formal education secondary education at public primary school ( where my most favorite subject is Bahasa Malaysia and enjoyed learning Science and Information Technology), besides I also love to go to school not because I love books, but I love to make new friends.
I feel lucky not faced too much discrimination and challenges during school time or childhood, what a most of the challenge things that I need to handle is to face the problem with an adult, which is always looked down on my ability, mocking my physical appearance, and make fun with my unique face.
What makes me independent and had a good life, is I believe in helping others and connect with people. Besides, strongly believe in education as a tool to change the people's mindset, attitudes, and perception.
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What I learn been "Putera Lilin" and "Alien" for 28 years are.
First thing, living as a "Putera Lilin" which can't expose too long under the hot atmosphere/environment does not prevent me from doing what I want to do...
Secondly, not having a full and perfect tooth also does not prevent me from eating what I want to eat...
Third, Not sweating also does not prevent me from sports and play role in society...
Fourth, different appearances and speech that sometimes sound other than others, also do not stop me from being a leader and accentuate myself.
Lastly, Whatever my distinction, being an "Alien" or "Putera Lilin" is not a real obstacle because
"I believe in the motto of - Your life is about making a decision (no matter if it's right or not), just let it happen first and the most important thing don't let other people decide your path of life and the way of how people to accept you, shape it yourself.
Now, it's time for me to give back to society and explain my condition to the public. My time is coming, I'm welcome the question and happy to answer it... I prefer to write instead of talk, since my spontaneous feedback a bit problem for me...
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