Woman, 33, fears losing her identity from neuro-degenerative disorder

First, it was her mother who physically wasted away due to the scourge of a cruel neuro-degenerative disorder.

Years later, in August, the same happened to her maternal uncle.

Both died after suffering complications from Huntington's disease (HD), a rare genetic condition that affects the brain and nerves.

Now, she wonders when it will be her turn.

Miss Calmela Hamid, 33, is coping with the symptoms of the same disease.

Children of HD gene carriers have a 50 per cent chance of inheriting the disease.

"It's not a pretty disease. My uncle was always moving around. His limbs were moving uncontrollably. He didn't remember us, his own family," said the former teacher.

"I thought, will I get there? What happens to me when I get there? Everyone faces the same thing,"

She has been struggling with involuntary mouth twitches, which are a symptom of Huntington's.

One of her friends, who is worried about Miss Calmela's battle with the incurable condition and the medical expenses, started a crowdfunding effort last week on her behalf. It has raised more than US$11,000 (S$15,700) as of last Saturday.

The genetic disorder crept up on the 33-year-old as early as 2010, in the form of sudden falls and speech slurs.

"There were times I would suddenly feel like I was going to fall, like I was about to lose my balance. Some people have cognitive problems, but for me, most of my issues had to do with balance," she said.

Miss Calmela, who has a younger sister, had an inkling that it was Huntington's, but refused to confirm her suspicions.

"I was a bit in denial. It took me a while to go see a doctor because I knew that it was a genetic disease," she told The New Paper last Friday from Tan Tock Seng Hospital, where she has been warded since last month.

DENIAL

"Actually, denial is also a symptom of this illness," she added with a small laugh.

Friends also noticed that she was dropping things more often.

But as none of them knew of Miss Calmela's family medical history, they thought it was sheer clumsiness.

She had a broken thumb and nose after a bad fall down the stairs in 2013, which prompted her to get tested for the disorder months later.

"After the fall, I thought I should go see the doctor. I can't always be falling," she said.

But no amount of mental preparation was enough to cushion the impact of the news.

"I wasn't surprised that I had it... My mind just went blank," Miss Calmela said quietly.

As her falls became more frequent, she was fired from her teaching job in a private school.

By then, her slurring had become more pronounced and it was clear she was no longer able to continue with the job that she saw as her calling.

Fear overwhelmed her as she struggled with the disease progression, coupled with negative thoughts.

"I'm losing myself and my memories. That's my biggest fear. I don't want to lose my identity and sense of self. It's scary," she said.

Last year, the 33-year-old attempted suicide after an exchange with her younger sister, who had screamed: "Kill yourself! Who cares for your life?"

The siblings do not get along.

But Miss Calmela stopped herself halfway.

Watching her go through dark episodes like this has been painful for friends like Ms Santhi Sathyamoorthi, 33.

The business development manager has known Miss Calmela, whom she calls Cal, for a decade.

"It's very distressing. There's hardly any word to describe how I feel. When someone tells you she's sick, you tell her to get well soon. But with Cal, I can't actually say that," she said.

Another friend, Dr Kanishka Herath, 33, added: "From what I have read, I'm sure the disease will progress in time to come, but she is still very much of sound mind."

The research scientist added: "That is why we want her to have as normal a life as possible right now."

Thanks to her friends' support, Miss Calmela has been able to pick herself up and trudge on in the battle against Huntington's.

Involuntary jerks now plague her when she grabs things with her hand or when she tries to move her legs, but they do not stop her from moving or reaching out for items she needs.

She manages her mouth twitches by stopping to take deep breaths and telling herself to "calm down."

Every day, she conscientiously does the "homework" the physiotherapist gives her, mainly leg lifts and using arm weights.

The former English and Literature teacher takes comfort in poetry, her "weakness" she said, as her eyes lit up.

But beneath the cheerful exterior is a patient who sometimes hopes she was not diagnosed with Huntington's.

"It will take a lifetime to come to terms with this condition," she said with a gentle shrug of the shoulders.

Disease incurable, but rare among Asians

Some have called Huntington's disease (HD) a combination of Alzheimer's disease and Parkinson's disease.

This is because the neurological disorder ends up affecting a wide range of movements, moods and thought processes in patients.

It is incurable, said Dr Charles Siow, a neurologist at Siow Neurology Headache And Pain Centre.

HD is an extremely rare condition caused by a single defective copy of the Huntington gene, in which a particular DNA sequence is repeated excessively, the neurologist explained.

Children of HD gene carriers have a 50 per cent chance of inheriting the disease as a gene carrier could pass along either the defective or the healthy copy of the Huntington gene, he added.

While HD is known as a rare condition here, there is no official data about its prevalence.

Dr Siow said: "HD is more common in Caucasians, less in Asians. I don't think there are enough patients to extrapolate the prevalence. I think over here, there is less than one HD sufferer in 100,000 people."

A 2012 research in the UK, on the other hand, cited a prevalence of 12 in 100,000 HD sufferers.

With no cure in sight for the lifelong disease, patients can only rely on symptomatic treatment as the condition progresses, Dr Siow said.

In the beginning, a patient's speech becomes slurred and balance becomes impaired so falls are common. Sufferers may also develop a swallowing disorder.

Cognitive changes that follow can range from difficulty in thinking and learning, to a tendency to become inflexible and demanding of family and friends.

Patients may also develop memory loss.

Depression is common, especially for patients who have seen a parent struggle through the same disease progression.

fjieying@sph.com.sg


This article was first published on Nov 16, 2015.
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