How there’s, too little help provided to this special needs group of people, how there are more that the government can do, to help this group of special needs people to live better, off of the Front Page Sections, translated…
As I had my birth by caesarean in March of 1999, the gynecologist tried to help me feel better, stated, that the “melanin is absent”, perhaps, he’d feared, that I couldn’t, accept it! They didn’t show me my daughter immediately. I’d gone to the nursery to see my baby girl, and she was, so very, beautiful! The natural curls, with the pale complexion, made her look like those, porcelain dolls. Did I cry? Yes I had, the night I’d given birth, for the entire night, then, I’d, started, looking for data online.
There’s a one in 15,000 chances of albinism, it’s due to a recessive gene that’s hereditary, or the genetic mutations. And there are multiple types of albinism, the first, with the worst eyesight; the second type, brown hair, a bit better in vision. My daughter was the first, the conditions of nystagmus caused her to not be able to focus her sight, reading and study is, quite hard for her. She’d had to, put up with the looks from her external environment, needed to put on a lot of sunscreen to protect her skin. When she’d made the lower grades, she’d felt she couldn’t measure up to herself, when she did too well, she couldn’t, measure up to everybody else’s, standards, truly hard for her. I’d thought, that everything will go smoothly after she was diagnosed and treated, but, the ears also needed the melanin to function, and other than her deteriorating sight, her hearing was going away too, and she needed the hearing aid, and, all of these made her get ill psychologically.
As I’d gotten involved with the albinism group, I’d learned, that sight and hearing aren’t the only difficulties, some had cerebral palsy, autism, mental retardation, epilepsy, etc., etc., etc. as the side effects. And there are those who can’t, get past it inside their minds. Are we all upset? No! We’d still work our hardest, to pass our days, some became skilled massage therapists, some tested into the public offices, some are musicians, some, shop owners, some designed the animations, and there are the YouTubers too!
the statistic of albinism in a pie chart
I truly hope, that the Department of Health Sanitation and Welfare can list albinism as a rare condition, to unify the name. The first trouble we face is, what department do we go to to get the conditions treated? What sort of a practical help can the medical profession give? How can the education be offered to this group of children normally? Like for the physical education course, out under the scorching sun, the accommodations made to these students; the teachers can write using the bigger letters, and harder, to help them see better in class. And surely, to teach the other students in class about albinism, so they become more accepting, to set up the foundation of support, for the communities, the society to understand this condition, I hope that everybody in the society can speak for the individuals diagnosed with albinism in the future. There are, the lacking in social welfare, I hope, that the foundations can get in touch with those who’d been diagnosed with the condition actively, to help and to offer assistance to them in life. Currently, there’s the lacking in the standards of funds allotted for the assistance, in the years of usage of the needed equipment as well, all of these is being, amended into law, I hope, that our voices will be heard, by the Department of Sanitation and Welfare.
All the things, I still want to tell. Anyway, I hope, that the government departments will become a sturdy support, standing behind those who’d been diagnosed with albinism, to help the entire society become friends, with individuals with this, rare condition.
And so, this, is on how there are the help offered, but, the resources are too hard to get, because, there’s only, a tiny proportion of the population with this condition, which means, that it won’t get listed as a insured condition by the national health insurance systems, which will make it harder for the families with these individuals with the conditions, as there are multiple complications that came with this condition, like the mentioned, the deterioration of hearing, and others. There’s a lot more that the government can do to help these special needs individuals in the society here.
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