'It felt like my world had stopped': Woman struck by autoimmune disorder at age 22, now a mother to a 2-year-old

SINGAPORE - Two years after moving from Johor Bahru to Singapore for work and further studies, Ms Stella Mui began experiencing double vision.

Over the course of six months in 2009, Ms Mui, then 22, visited a number of general practitioners and optometrists to figure out what was wrong with her eyesight.

But they were unable to diagnose her, prescribing eye drops instead, or suggesting that there might be a problem with her contact lenses.

Then, one evening in July that year, she suddenly felt weak as she was leaving her accounting class and collapsed.

"It was very sudden. I lost all my strength, and then I fell down," said Ms Mui, now 37 and working in the financial sector.

Her boyfriend helped her up and accompanied her home.

However, she experienced the same thing the following morning, suddenly losing her balance and falling down.

It was then that Ms Mui began to suspect that something was wrong.

She returned home to Johor Bahru and visited a hospital, where - after going through a battery of tests - doctors diagnosed her with generalised myasthenia gravis.

Seeking a second opinion, Ms Mui visited the National University Hospital (NUH) in Singapore, where doctors confirmed the diagnosis.

Myasthenia gravis is an autoimmune condition involving the development of the harmful acetylcholine receptor antibodies that can attack the patient's own muscles.

Globally, generalised myasthenia gravis affects about 12 in 100,000 people. While there are no local statistics, NUH sees about 10 to 20 new cases each year.

"It can be difficult to diagnose as signs and symptoms may have a fluctuating course, where patients can appear normal at times but show signs only after exertion or at the end of the day," said Dr Kay Ng, a senior consultant with NUH's neurology division.

"Initial symptoms also may be minimal, such as blurred vision, mild breathlessness or difficulty swallowing, and these symptoms may not only change throughout the day, but also differ from patient to patient," she added.

While women are more commonly affected by the condition before the age of 40, a higher proportion of patients aged 50 and above are men, though the reasons for this are not well understood.

"It may be due to an interplay of differing reproductive hormones and age on the patient's immune system in the development of autoimmune diseases," said Dr Ng.

She added that while its root cause is unknown, risk factors for myasthenia gravis include genetic susceptibility, a personal or family history of autoimmune disease, and the presence of thymic tumours or abnormalities.

Ms Mui told The Straits Times she had difficulty accepting her condition, which has no cure and would require her to be on medication for the rest of her life.

"To me, it felt like my world had stopped," she said.

Her condition slowly worsened, and she found it difficult to perform other daily tasks, such as walking unsupported or even drinking water without a straw.

During her wedding in 2014, Ms Mui refused to allow photos of herself to be taken due her drooping eyelids at the time.

Between 2014 and 2017, she found herself admitted to the intensive care unit annually as she experienced issues such as breathlessness and low blood oxygen level.

It was then that Ms Mui decided to undergo surgery to remove her thymus gland, which had been suggested to her before but which she had previously declined due to concerns over side effects.

The thymus gland is a small organ in the chest which produces white blood cells to help fight infection, and is also believed to be the source of the antibodies which attack the body's muscles in myasthenia gravis.

Thymectomy, or the removal of the thymus, has in recent years become a widespread procedure in the treatment of myasthenia gravis.

"Surgery offers the possibility of (alleviating) myasthenia gravis in two out of three patients," said Associate Professor John Tam, head and senior consultant of the thoracic surgery division at the National University Heart Centre, Singapore.

He added that while there is a one in three chance that the patient will not experience significant benefit after the surgery, the operation does offer patients the chance to reduce the amount of medication they have to take, or be off medication entirely.

The surgery caused Ms Mui's condition to come under control, her symptoms went away, and she started taking a smaller amount of medication.

It was in 2018, after her surgery, that Dr Ng asked Ms Mui if she wanted to have children - something she had never considered given her condition.

Pregnant myasthenia gravis patients face a higher risk of complications such as pre-term delivery and poor foetal growth, in addition to the possibility of passing the condition, which is genetic, to the child.

However, the usual drugs used to treat the condition can be taken while attempting to conceive and during pregnancy to keep it under control as the benefits outweigh any risks, said Associate Professor Chan Shiao-Yng, a senior consultant with the division of maternal and foetal medicine at NUH.

"With well-controlled disease, the chance of a successful pregnancy − defined as having a healthy baby to take home − is high," she said.

After adjusting Ms Mui's medication and ensuring that she was strong enough, Dr Ng said it was okay for Ms Mui to try to conceive in 2020, and she gave birth to a healthy baby boy the following year.

Though she will have to continue taking her medication to live normally for the foreseeable future, Ms Mui said she is thankful to be able to live a normal life, adding that her focus is now on taking care of her two-year-old son.

"As a mother, all your thoughts are on your child," she said.

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This article was first published in The Straits Times. Permission required for reproduction.