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Tuesday, February 10, 2009

Chocolate-SLE

I don't know whether i should or not wrote about this. Well about last April my younger sister which is at Form one at that time went to her school camping. After returning home, she was very fatigued or tired. My mother took her to the clinic a few times but the fever was not decrease. So after that she was took the the KPJ hospital and was found that her Keratinin and Urea in her blood was very high. Thas was the reason why she was tired all the time.

So the doctor admission her, and after a few investigation it shows that her kidney was not functioning. Then KPJ hospital refer my sister to pediatric ward in HKL. That was the start of our nightmare. She was founded positive for SLE. My sister has to went through dialisis were the tube was sucked into her neck. After about 3 months throgh dialysis and a month admitted in the ward, then the dialysis was stopped. But still until now her kidney was only 40% functioning. Hope anybody who came by and know about the disease can gave me more information on how to cure her kidney.

To who, who might not know what SLE is:

What is SLE?

Systemic Lupus Erythematosus (SLE) is a chronic, auto-immune disease of unknown cause where the patient’s body makes large quantities of blood proteins called anti-bodies that react against the person’s own tissues.

History
Lupus is the Latin word for wolf. Erythematosus means red rashes. In 1851, Dr. Cazenave discovered red rashes on a patient’s face that looked like wolf bites. He named the rash Discoid Lupus Erythematosus (DLE).

In 1885, Sir William Osler recognised that many people with lupus had a disease involving not only the skin but many other organs or systems. He named the disease Systemic Lupus Erythematosus (SLE).

Types of Lupus
Discoid Lupus Erythematosus (DLE)
• Only involves the skin
• Rarely spreads to other organs

Systematic Lupus Erythematosus (SLE)
• Can spread to other organs
• Can be fatal

Statistics
About 90% of SLE sufferers are women while about 10% are men and children.
About 90% of women with SLE are in their childbearing years, within the range of 15 to 50 years old.
Ratio of SLE sufferers :
In the West, among Afro-Carribeans 1 in 250-500 people
USA - 1 in 2,000 people
China - 1 in 1,000 people

In Malaysia, it is estimated that more than 10,000 people have been diagnosed with SLE over the past 30 years. However, this number may be only the tip of the iceberg. The Malaysian SLE Association believes that there are many more SLE sufferers in Malaysia who have not been diagnosed.

Patients’ Guide

Lifestyle

  • It is advisable to use sun block (with SPF of at least 45)
  • Use an umbrella, hat or wear long sleeved clothes to avoid getting too much sun

Medication

  • Please follow your doctor’s prescription
  • Do not stop your medication without your doctor’s approval
  • Do not mix your medication with other medications of unknown origin. This is to avoid unwanted interactions between drugs

Follow-up Treatment

  • Always keep your appointments with your doctor
  • Obey your doctor’s instructions

Stress

  • Try to avoid stress as it may trigger flares
  • Always think positive

Diet

  • Recognise foods that suit your individual system
  • Have a balanced and healthy diet
  • Observe a healthy diet with low salt, low fat, low sugar and take enough calcium and Vitamin D
So plz be aware if our kids or family has this symptoms. Do refer to the hospital asap.For more information about this disease you can go to http://www.lupusmalaysia.org

4 comments:

Mr.kaka said...

sad to hear that!
My best friend's aunt was diagnosed by SLE rencently.
hope your sister goes well soon.

miera said...

ayong...1st of all..
ko da kawin ke..sorry to hear bout ur sis..ckp kt die jgn stress2 n capek2 sgt tau..cuba minum susu alphalipid,tau x?sejenis colustrum..ada patient yg sle minum n berkesan..penah dgr x?in case wanna try..
~btw,lm gle xdgr cter ko..ingt ke x kt aku lg nih..

Mardiah Mohamad Thani said...

tanx both of you. hmm penah dgr. tulah nak usahakan care lain. what eve the best thing is we all have to accept it.

zyrin said...

hi,

am bloghopping.

one of my closest friends was diagnosed with SLE i think almost 3 - 4 years ago. nak dekat sebulan jugak dia kena hospitalized, and kitorang semua risau sebab sampai ke sudah tak terdiagnose penyakit dia.

when we found out it was SLE, i cried - partly for relief, sebab sekarang dah tahu what's wrong, and she can get the correct treatment. partly for fear, because i didn't know much about SLE, and i thought i was 'losing' her very, very soon.

it's not a bed of roses... but we manage :) there's the bad days when she gets hospitalized and loses so much weight, and there are the good days when we can go on trips on stuff.

tak boleh stress2 sangat. tak boleh nak berjemur. kena jaga makan-minum. hidup kena 'berdisiplin' and 'regulated' sikit.

Insya Allah boleh manage.

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