ONG KIAN HU has Parry Romberg Syndrome Updated : 18th Oct 2005


Born in 1971, Age at 2005 is = 34
Country: Malaysia.
Race: Malaysian Chinese

Parry Romberg Syndrome (PRS) = Progressive Facial Hemiatrophy (PFH).
Alternative definition: Fat on face wasted away, Sunken Face etc...

ONG Kian Hu's Story

Just to make my story simple and informative. As shown in the pictures below, I was born perfectly healthy.

The story started when I was 11 years old, like most children did, I was very active in sports escpecially during my primary school.

I remembere there was no seriuos sickness or accident during my age of 11 or 12. Except there were headaches which happened to me which may not be related to PRS since I like to play football under the hot sun/day time and there were few times that I got sick/fever which is very common as a result.

For my case, I only knew about my right face started to shrink when I was 12 years old. When I double checked with my previous pictures, I noticed that the PRS sign already started when I was 11 years old. As most people (PRS) did, I went to see a number of doctors when I was 12 and 13, (dentist, bone, brain specialist ). Most doctors do not know exactly about the reason and no remedy especially in 1980s. I also do not know what is the name for this disorded decease at that time, I only know about that I have PRS until I found the PRS connection in May 2005.

The picture below (11 years old) already show the PRS in progress, together is my younger sister who was only 1 year old.

The PRS seem active from 11 years to 21 years old ( I estimated ). Since 21 years old until today, there are not much different. I was lucky as the PRS do not really affect my live too much in term of my health. Having many friends and busy in school made me forget about it. I also learn it is more important to judge a person from inside and not from the looking.

I met my wife in 23 years old, Joanne.

We got married in year of 2001 (30 years old).

In year 2003 (32 years old) , my 1st son (Jing Yi) was born.

So, my story is simple and pictures tell all.

Message below send to Theresa (one of the PR connection's founder) on 6th May 2005 #3573

Hi Theresa,

My name is K.H.ONG and currently staying in Malaysia. (still not yet a member of Parry Romberg's Connection)  After reading your message posted in the website, although we do not know each other but I am sure we have a lot in common especially dealing with Parry Rombergs Syndrome. I had my Parry Romberg when I was 12 years old. As normal, most people affected with Parry Romberg do not realize it until the face start to give an obvious different looking.

I went to see specialist/ doctors (bone, brain, nerve etc.. ) when I was 13 years old, no definite answer were given by the doctors and no medication as well. I was from a poor family and I still remember my parent have to borrow money in order to send me to KUALA LUMPUR  to see a doctor (brain specialist) at that time.

After going through all these I felt very tired and burdening my parents. I stop seeing doctor from there on. I am lucky as I do not have any pain and I just carry on my live normally.

Until 2 days ago when I went to carry out a medical check-up , the doctor told me my case could be Parry Romberg as indicated from internet.

I am glad to know about you even we are staying at different part of the world. I am 34 years old now and have a supportive wife and a lovely son.

I always think the god is fair, if you lose something, you will get back something else as well. From the experience, I learnt that it is not important on how other people see myself, the most important is how I see myself.  I worked hard since I was 22 years and today I am happy with what I have achieved.

I run my own business now and has been many countries in the last 10 years. If you are free, please visit  my company website: www.hexagonchoice.com. Maybe this will give a little courage to those people out there with Parry Rombergs.

Feel free to contact me anytime.

Regards,
K.H.ONG

ONG KIAN HU ALL rights reserved @ 2005