The Sickness
Young KL-city urbanite struggles to find herself in the face of a strange skin condition.
By YVONNE FOONG
.
PETALING JAYA, MALAYSIA- She approached me at a farewell dinner. No taller than my shoulders, Fiona struck me as a child. It wasn’t minutes before I remembered. She was 17
-
I had forgotten Fiona’s promise to attend. Overcome by surprise, I hugged her. My hand grasped an unfamiliar form. Curiously, I held it closer and stared in disbelief. Her hands, disfigured by years of blisters and wounds, had lost their form. The blackened nails resembled a cat’s claws. Still holding hands, she peered at me with her almond eyes. She was smiling, but there was also shame and fear.
-
I held her tighter to show I didn’t mind. “It’s okay,” I swallowed the words.
-
Our friendship progressed in the months to come. After much effort and deliberation, the convinced Fiona pressed doctors for more information.
-
Her diagnosis? Epidermolytic Hyperkeratosis, also called Bullous Congenital Ichthyosiform Erythroderma,
-
As exciting as it sounds, this illness caused by genetic mutations on Keratin 1 and Keratin 10 proteins remains incurable. Meaning Fiona will suffer until an effective treatment is found. Her skin all over would form blisters, itch and expel puss unpredictably. New skins would grow, sometimes before old wounds could heal, but only to fall off again when irritated, distorting her appearance.
-
Fiona is socially deprived at the prime of her age. The illness forces her to remain indoors to avoid contact with irritants as much as possible. Her mother maintains a tight grip to ensure her safety. Lactose intolerance and poor keratinization made Fiona fragile, inviting mishaps.
-
When Fiona was old enough for school, both mother and child presented themselves at the education ministry for enrolment procedures. According to Fiona, the officer allocated her to special schools, which she presumed was for the mentally challenged. Seeing it as stereotypical and humiliating, her mother decided to educate Fiona at home.
-
Her academic progress is now at lower secondary. A schoolgoing private tutor comes round occasionally to help. Fiona clocks up 8 hours a day as a clerk in her small family-owned automobile workshop, Powermate Motorsport Accessories off Jalan Klang Lama. Together with her brother and colleagues, the office became a container of both fond and frustrating memories that make up much of her social life.
-
Despite her own afflictions, Fiona has been a loyal friend who continuously supported my cause. When shopping for seasonal gifts, she would buy off my store instead of the more interesting shopping malls.
-
“How do you like the website header? Anything you want to change?” I asked.
-”Can you include the name of my illness? Hopefully, those who see it may be able to help.”
Fiona writes a blog at http://fionaths.yuinyin.com
——-
This article is copyrighted. Contact yvonnefmn(at)gmail(dot)com
