Elderly scleroderma patient needs to take more than 30 pills a day

Endotek Ambok can spend most of her monthly welfare payment simply getting to medical appointments. The 72-year-old woman, who lives in Kampung Ulu Air Kuning Selatan in Tampin, travels to Hospital Melaka two or three times a month for treatment of scleroderma, a rare autoimmune disease.

A one-way e-hailing trip costs about RM90 to more than RM100. With several visits each month, transport alone can reach roughly RM500, before the cost of returning home, meals and other needs. When relatives and acquaintances cannot drive her, Endotek turns to e-hailing services.

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Once I go, the e-hailing fare is around RM90 to more than RM100 for a one-way journey. If I go two or three times a month, transport alone can reach about RM500. That does not include the return fare, food and other needs.

She was recognized as a person with a physical disability in January and began receiving RM600 a month from the Social Welfare Department in May. She says the money must cover food, utility bills and hospital travel. “It is not enough, but I am grateful that I still receive assistance,” she said.

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All my savings have been used to cover treatment costs. I have no children, and the RM600 is used for food, utility bills and hospital costs. It is not enough, but I am grateful that I still receive assistance.

Endotek was diagnosed in 2006 after seeking treatment at Selayang Hospital. The disease has hardened and tightened her skin and affected her joints, fingers and movement. She says she struggles with daily tasks such as cooking and needs to take more than 30 pills each day.

Her weight has fallen from 96 kilograms to about 42 kilograms as her appetite declined. She can eat only soft food such as soup and porridge because problems with her mouth and teeth make it difficult to chew hard food. Once active in community groups and nongovernmental organizations, and formerly a tour guide, she now has no fixed income. “I do not want to burden other people and, as long as I am able, I try to manage on my own,” she said. She is seeking donations, particularly for hospital transport and treatment.

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I do not want to burden other people and, as long as I am able, I try to manage on my own. However, I need help, especially to get treatment at the hospital because I no longer have transport.