National Marfan Foundation
(Include People in the Community and etc.) |
http://www.marfan.org |
Features of Marfan’s Syndrome in Me
Tall stature and arm span greater than height
Upper half of body shorter than average and lower half of body longer than average
Chest bone curved in (i.e. Pectus Excavatum)
Mitral Valve Prolapse and no Mitral regurgitation
Irritable Bowel Syndrome
Migraine
Biography
My name is Willie Loh Chung Wei. I am a 21 years guy currently servicing my National Service and will be finished in Jan 1998. September 10 1997, a day that really turns into a day of uncertainty of the future. Doctors in Singapore General Hospital diagnosed me as having "Marfan syndrome", a connective tissue disorder. Everything took a great change in my life as well as myself.
Since young, I am considered quite weak - most of the time having fever, headache, diahorrea, dizziness and even having many injuries including ankle sprains, hand injuries and even head injuries. No one seems to understand how I feel as though I am malingering or having psychological illness.
When I reach at around adolescence, my chest started to curve inwards. I didn't know why even some doctors don't know why. The following year, School Health Services - a division of Ministry of Health (MOH) came to my secondary school to do a medical checkup for all the students. When I saw the doctor, I told him about the symptoms - Walk one step, pant one time. He immediately diagnosed me -? Heart Conditions.
He refers me to doctors in Institute of Health (also a division of MOH) for further investigation and was excused from any Physical Exercise until further notice. In May 1991, I was confirmed having Heart Conditions so called Heart Murmur. The doctors referred me to cardiologist in the same Institute of Health.
The following day after my 15th birthday, I complained of chest pains and was admitted to the nearby hospital. They told me that I had heart murmur and they refer me to see a cardiologist. The cardiologist performs tests - ECG, Echocardiograhly and told me that I had - Mitral Valve Prolapse in short, MVP. The cardiologist told me not to worry and precripstion some medicine but too bad I don't have enough money to pay for the medicine. Since then, I had chest pain on and off.
In 1993, I had a fall resulting in my hands being very painful which was referred to Singapore General Hospital Hand Surgery Department for follow-ups. They did a minor surgery on me and the pain subsides (although I still having pained to date). I was then going to take my GCE 'O' Level Exam in the same year.
In Sep 1995, I was informed by Ministry of Defence to report for registration for National Service. They done a medical check-up for me and I showed them the entire supporting document I had. They certified me of being service fit (Graded Pes E) instead of combat fit (Graded Pes A, B and C) In Jan 1996, I was enlisted for National Service.
The day after Chinese New Year, I was having dizziness suddenly and was admitted to the same hospital by my camp medical officer. I diagnosed having tinnitus and again having dizziness from Feb to Jun, which I report sick at private clinic and later on I was banned from reporting sick at private clinic but only at camp medical centre or government hospital/clinic went for a second opinion at Gleneagles Hospital, Singapore and was diagnosed as migraine and was given silbelum.
3 months later, I was having the same problem again. In late October 1996, while doing some checking some equipment above the false ceiling, suddenly, I lose balance and I hurt my hand as well as my back of my head which was banged against the table. Later on I was having numbness in my hand, a blurred vision, talking rubbish. Since then, from late October to early November, I have been having pain in my head. I was in the midst of my preparation of my examination. What I study before have gone blank. I never did well in my exams.
After exams, I took some period of break before I started a new course in April 97. In the army, I had to perform camp duty when I find very tired, having a splitting the next 4-day. In August 97, I went for nose surgery - to correct devial nasal septum and seplastry. Early Aug, South East Asia is plagued with smoke from burning trees and forests in Indonesia. This caused the haze which can reach up to 800 PSI (Pollutant Standards Index set US adopted by the South East Asia Countries). This could caused respiratory difficulties, chest pain, sore eyes and have a very effect on me.
Since then, I was having severe chest pain and chest tightness and subsequently report sick at camp medical officer as well as hospital accident and emergency department. I was diagnosed as Marfan syndrome on 10 Sept 1997.
I had been trying to pull myself both in emotionally, mentally and physically. I had been branded as malingering by camp medical officer, friends, and relative even camp mates. Now I could feel that I am going slimmer day by day, chest started to curve inwards (about 75% reaching the back), I can even feel my ribs whenever I touch my chest in the event of pain. I think it is deformity.
Please note that the facts below is a true life account of me and it is inter-related with each other)
If you have any queries or wish to write to me, you can reach me at
lchungwe@mailexcite.com