Another IEM patient's story-MSUD

Shun family is not vegetarian, but ever since Shi Han was born, the
family have not eaten meat and eggs.

If they whole family went out for fast food, while his elder brother is
eating crispy chicken, Shi Han just request his brother to let him
smell.Later, he will quietly go to eat ice cream,potato chips and drink
his soft drink.
In kindergarten, while teacher distributing biscuit, everyone will eat
the biscuit directly.Shi Han just keep it in his beg, till evening
whenhis mom come back, he will ask his mom if he can eat it? His mom
will said:"cannot as inside biscuit got nuts".Shi han was diagnosed with
MAPLE SYRUP URINE DISEASE (MSUD)while he is still infant, no medication
will cure him.He will never get cured, can just control his diet, do
blood test to prevent the disease became worst.
Since their body cannot digest meat,egg,milk and beans.Even a nut or an
egg,will cause damage to their cell,influence their IQ, even endanger
their life.What is MSUD?Doctor cannot give him explanation, only suggest
her to bring her son to GH to seek help.

It is called MSUD as the urine and body's liquid of the patient got
smell of maple syrup.It is a rare genetically defect disease (IEM).Due
to the body cannot process high protein food like meat,egg,milk, beans
etc.Even a nut or agg will threaten the health, cause damage to the
brain cell,effect IQ or endanger the life.
hence, he had to be very careful on the type of food to eat. His mother
always teach him what are the food he can take or cannot take

(The article  above was translated from China Press dated 20/4/07)



IGNORANCE WILL ENDANGER THE PATIENTS


IEM is diseases due to sudden changes in gene, which will effect the
proses of metabolisme.

In this world, out of every 1500 new born babies, 1 will be IEM patient.
Due to the variety of IEM diseases and it is very rare,hence not easy to
diagnosed. However, lots of IEM diseases if not diagnosed early. It will
damage the body function.If patients are diagnosed early,not given the
early medication/treatment or special milk powder, it may endanger their
life or left regrettable impairment, eg: mental retarded, physically
disability etc. Shi han's is consider lucky among IEM patients.

While he was 2 1/2 month, he suddenly had cough, high fever, later even
had difficulty to breath and fainted.However, the hospital that he was
admitted cannot diagnosed the root cause of the illness.It is when he
was sent to GH then his illness is diagnosed.

FORMING OF MMS 
Majority of IEM patients do not understand the illness.Some even wasted
many years to seek doctors, yet none of them is able to tell them the
illness that their kid has. In order to avoid other's family repeat
their mistake, a group of IEM patient's parent are forming Malaysian
Metabolic Society (MMS) on 22/7/05. The mission of IEM is to create
public awareness by providing IEM info.

Parents can easily find info and book abt MSUD in Taiwan.Locally,due to
financial problem, no one is writing about it, hence it is hard to find
related info.However, the newborn screening technology provided by
certain GH in Malaysia is among the best in South East Asia. AT early
stage, IEM diseases is not significant.It is through new born screening
that will able to give new born baby who has IEm diseases, to have
appropriate treatment.


If you want to help those IEM patients, you can donate to MMS.

All cheques payable to
Malaysia Metabolic Society or Persatuan Metabolik Malaysia,
PO Box 6098 Pudu,
55710 Kuala Lumpur

or
you can be MMS members, (individual annual fee is RM25, family annual
fee is RM30, corporation annual fee is RM10,000. Plus RM5 registration fee)


web page：http://www.mms.org.my