30 December 2009, Wednesday

It's one more day to the end of year 2009. I am saddened by the death of a 21 year old medical student at NUS Christine as her condition and symptons are very similar to mine.

There is a 2nd story below about a Lupus mum who finally became a mum after a hard struggle and IVF. Of course I wouldn't know how much she has gone through to finally be a mum.

I guess is how I want to view life in a more optimistic or pessismistic manner. Based on the 2 stories below, my condition and symptons seems to be similar to the sad story that is not knowing when I will just kick the bucket.
There is not much control for me as destiny does not lie in my hand. I guess I can only live life to the fullest so that the day I died, I will not live life with regret. It's 13 yrs since I had this Hymelotic Anaemia which move on to Lupus. I guess my condition is not really improving but worse. I can only try to maintain a optimistic outlook of life in order not to worsen my condition. Keeping myself free from fatigue and stress free is also important to ensure I don't have a relapse. Of course, deep in my heart, I pray that I will be like the woman in the 2nd story to be a happy mum of with with the support of my dear hubby who has so far been very supportive and concern of my condition.


Below is her Lupus story and is a sad one
http://www.asiaone.com/Health/News/Story/A1Story20091229-188690.html

21-year-old medical student dies of mysterious brain disease She had a brain disease that left doctors scratching their heads, but despite her illness, Christine Chong decided to face life with courage.
However, death chose to rob the young 21-year-old's life almost two weeks back.
The second-year student at the Yong Loo Lin School of Medicine had suffered from an autoimmune disease called Systemic Lupus Erythematosus (SLE) for 11 years, reported Shin Min Daily News.
During that period, Christine sometimes had to undergo monthly check ups and ingest cocktails of medicines to survive.
Her illness was unstable - it would flare up when she was stressed. Christine also suffered from anaemia.
In March this year, her condition turned for the better.
However, towards the end of the month, it plunged.
She wrote in her blog about her frequent splitting headaches and bouts of dizziness, which required her to go through rounds of tests at the hospital, one of which was a brain scan.
Her eyelids would also twitch constantly, which made studying and typing difficult. She was so weak that she had to depend on a wheelchair to move around.
Even then, slight movement was difficult for her. Each time she got off the bed, dizziness would engulf her. As a result, she had to lie down most of the time.
Despite the pain, Christine chose to sit for her exams.
One of her tutors at the medical school would bring the exam papers to the Singapore General Hospital - where she was hospitalised - for her to complete.
She wrote that she was grateful for her tutor's support.
Christine managed to stay cheerful during her hospital stay. She felt especially happy when her friends visited her
Nonetheless, she felt that her brain disease was "quite mysterious". Even though doctors took biopsies of her kidneys and scanned her brain, they could not figure out what was wrong.
In April, she underwent brain surgery. She wrote in her blog of how the doctors shaved off her hair and drilled a one-cent sized hole in her skull during the operation.
The medical student suspected that she had contracted vasculitis, or an inflammation of the blood vessels. Research done by the Chinese daily said that vasculitis was a symptom of SLE.
In one of her blog entries, she wrote: "I'm resigned to my fate. I just want to know what is it that wants my life."


This is another happy story of a Lupus mum
http://www.asiaone.com/Health/Women%2527s%2BMatters/Story/A1Story20091224-187927.html


Lupus did not stop her from trying for babies A happy home is one filled with the sound of children's laughter. That is what Madam Low Kwee Yoong, 40, believes in.
The accounts executive, a mother of four, could not be more proud of her noisy brood. She underwent in-vitro fertilisation (IVF) for the second time last year and became pregnant with twin boys Jun Kai and Jun Hong.
Related:» Baby bonus» Common causes of infertility(women)» Common causes of infertility(men)» Help to usher in the stork» Happy Mum 2 She said in Mandarin: "I was happy when I learnt I was pregnant. The pregnancy was a smooth one but I could not relax until the fifth month as many developmental milestones had to be passed first before my gynaecologist, Dr Ann Tan, said they were okay."
Madam Low's first IVF attempt in October 2006 was unsuccessful. She explained: "I wanted Jun Ming to have a companion. The home is so much nicer with more children." Jun Ming, now 12 years old, is her firstborn.
For years, Madam Low and her husband, Mr Tan Khoon Sang, 47, tried unsuccessfully to conceive again. She suspected it was due to her having lupus, an auto-immune disease characterised by acute and chronic inflammation of the body's tissues.
Determined to conceive, she opted for IVF. When that failed, she was devastated: "When the embryos didn't take root, it was like a miscarriage. I bled for four to five days."
A few months later, the couple were blessed with a daughter, Li Yu, conceived naturally. She is now two years and 10 months old.
In September last year, Madam Low decided to give IVF another shot as she still had three viable embryos in storage. Dr Tan had said her chances of getting pregnant would diminish with age.
She decided to go for her second IVF attempt even though her doctor who treats her for lupus disagreed. She took blood tests every two weeks throughout her pregnancy so that her doctors could monitor her condition closely.
She said: "I felt it was worth it to sacrifice a little for my family. If you want children, you'll do anything to have them."
This article was first published in Mind Your Body, The Straits Times.


Living with Lupus
http://www.asiaone.com/Health/Wellness%2B%2540%2BWork/Story/A1Story20081209-106570.html

IF any newly diagnosed Systemic Lupus Erythematosus patient asks Chee Siew Lan for advice in dealing with the chronic illness, she has only this to say: "Never give up."
Having lived with this incurable illness for 21 years, she knows that she would not be alive if she had given up hope and didn't have the determination to fight it.
"When I had the symptoms in 1987, no one knew what it was. Lupus was unheard of at that time. The doctor even told me that I had only five years to live. But I refused to give up. I did my own research and learnt all about the symptoms, treatment and medication. I learned the things that I could and could not do as a lupus sufferer.
"I tell lupus patients that with proper medication and management, they can lead a normal life."
As Malaysian Systemic Lupus Erythematosus Association honorary secretary, Chee says at times she has had to counsel other sufferers, some of whom had to deal with the uncertainty of their condition. Most of them, she added, were depressed and fearful when trying to understand the disease.
It wasn't an easy ride for Chee either as she had numerous remissions and relapses. She also had to deal with the side-effects - osteoporosis and early menopause - from the medication.

The medication had suppressed her immune system which then exposed her to infection. In 1988, Chee was hospitalised for cryptococcus meningitis. She also had to undergo a cataract operation in 1997.
"Drugs control flaring but at the same time they will suppress the immune system. This makes lupus patients more vulnerable to infection. What may be a normal infection to others could be more serious and, at times, even fatal for patients."
Although she has been in remission for 10 years, Chee says it does not mean that she is free from the disease. While she is no longer on steroids, she still takes medication to prevent the flaring.
Consultant rheumatologist Dr Yeap Swan Sim says lupus is a chronic auto-immune disease that can affect various parts of the body, including the skin, joints, heart, lungs, blood, kidneys and brain.
"In a lupus patient, the body's immune system starts to produce antibodies that attack itself. These auto-antibodies cause inflammation and eventually damage the organs. Lupus is not contagious, it is incurable and can be fatal if diagnosis and treatment are not given early."
The cause of lupus is unknown, although genetic and environmental factors could play a part in triggering it. It is believed that lupus is hereditary.
Some environmental factors which may trigger the disease include viruses, ultraviolet light, extreme stress, certain drugs, silica dust and smoking.

Lupus is known as a "woman's disease", as it occurs 10 to 15 times more frequently among females than males after puberty.
In Malaysia, lupus is 2.9 times more common in Chinese and 90 per cent of those affected by it are female. Based on 1990 figures, there are 12,000 lupus patients in the country.
While general symptoms are fever and fatigue, there are also other signs that can make early diagnosis a problem. It is often misdiagnosed and unrecognised as its primary symptoms - joint pain, fatigue, skin rashes and fever - mimic common illnesses.
"There have been no new drugs for lupus in over 40 years. Doctors use drugs that are used for other diseases to treat it. For example, we use anti-malaria drugs and even kidney disease medicine for lupus sufferers.
"While treatment and medication have improved the survival rate of lupus patients compared to 50 years ago, there is still a need for drugs that can reduce the side-effects."
Dr Yeap says the aim for treatment of lupus is to relieve the symptoms and suppress the over-activity of the immune system. Some of the medications cause side-effects such as high blood pressure, diabetes, cataracts and avascular necrosis of bone. They can also cause early menopause, leading to infertility.
With early diagnosis and treatment, patients can lead a normal life. Some 15 to 20 per cent of patients are on minimal or no medication at all.
"Now there is increasing awareness of the disease largely due to early diagnosis. The drugs are now much more effective in suppressing the immune system without causing severe infections.
"As this disease affects women at the prime of their lives, it is important for early diagnosis and treatment."
New Straits Times/Asia News Network
This story was first published in the New Straits Times on Dec 8, 2008.