Health

Sunday, 9 November 2014

'I Am A Zebra!' makes sense of paraganglioma, a rare disorder

Journalist Patsy Kam gives a moving account of her struggles with a rare disease, paraganglioma, in her book I Am A Zebra!

There is a saying in medical school: when you hear hoofbeats, think of horses, not zebras.

Often, the simplest and most straightforward explanation to a medical problem is the right one.

Sometimes, however, it is not. This is the tale of one such “zebra”: Patsy Kam, journalist and mother, who discovered a lump at the side of her neck during a routine check-up for flu.

Kam would discover she had paraganglioma, a rare disease estimated to affect one in 300,000 people in the general population every year.

While not debilitating in itself, if left untreated, the disease can be fatal.

Paragangliomas are rare tumours arising from the neuroendocrine tissues, usually benign, that grow into enlarging masses on the upper neck area, head, thorax and other regions of the body, usually along the parasympathetic chain.

Medical science has no conclusive findings on what causes these tumours to suddenly grow, or why some people are more predisposed than others.

I Am A Zebra!: Making Sense Of A Rare Disorder is Kam’s honest account of her experiences with the disease, from diagnosis to treatment. It is also the story of a woman who discovers her inner strength and resolve, as she battles one “lump” after another while making her way through the challenges of motherhood.

“When I call them lumps, it seems easier to handle, and nonsensical. When you recognise them for what they are, the unwelcome mass of tissue growing in me are tumours, and it’s hardly funny. Praise God that they are not malignant, but it doesn’t change the fact that every time I get cut up, I return the worse for wear,” Kam writes.

I Am A Zebra! contains Kam’s columns in The Star, as well as additional musings and observations on the subject. Combining medical information with breezy anecdotes on life and family, the book is simple to read and accessible to medical and non-medical readers alike.

It is hard not to feel moved as one reads about Kam’s ordeal, from her initial misdiagnosis, to the draining surgeries she has had to undergo, to being forced to have a hysterectomy after later being diagnosed with cervical cancer.

Yet, despite an uncertain future, Kam faces her predicament with grace and humour, eager to make it through for her three sons, or “Lamlets”, as she calls them.

“Sometimes, I feel like I’m fighting a losing battle. It’s like watching a cartoon on TV: you whack one lump, another one sprouts almost immediately. I tell myself, this will be my last surgery. But it’s never quite the last, it seems,” Kam writes.

What is striking is that despite the difficult circumstances, the book maintains a hopeful tone, and is a nice reminder that a positive attitude can get you through even the most trying of times.

Overall, I Am A Zebra! is a touching true account, written in a casual style, which can hopefully raise more awareness on a little-known disease. Its empowering tone may also be a boon for anyone struggling with rare or difficult diseases.

Tags / Keywords: patsy kam , paraganglioma , i am a zebra

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