“Twinkle little weeny star
How I love all what you are
Up above the little star
Like my mama in the skyyyyyyyyy!!!” I recited the poem and threw my hands in the air as I mentioned the last word.
“Just shut up! You’re just so dumb Manny. I’ve been teaching you just this poem for the past few minutes and you keep saying rubbish. I’m going to flog you today”. Olive shouted at her niece, Manny.
I’ve Prader-Willi syndrome
“Aunt Olive pleasssseeeee, don’t flog meeeee, it’s gonna hurrrtttt…”
This is one of the experiences I went through growing up learning. I have learning disability, which isn’t my fault. I mean if we could all pick choices like that in life, wouldn’t we all be smart? Also, I am one of the few people living with Prader-Willi syndrome. It is a congenital anomaly and it happens due to an abnormality on chromosome 15. I don’t really understand what that is, but that’s what I was told by my parents.
Intellectual disability is not only the condition associated with Prader-Willi syndrome. I also suffer from chronic hunger…kinda like an obsession with food. Once when I visited my cousins during Christmas break, I overheard my aunt telling them to lock all cupboards in the kitchen. All because she believes I will finish all their food. I don’t blame aunt Olive though, I eat a lot, more than you can imagine. Infact, the truth is I never get full. It is not that I want to keep on eating, but I always feel the hunger pangs. Mama says it’s because something in my brain(hypothalamus) is failing to work properly. She also mentioned something like the ghrelin hormone in my body being always active.
Why are People with Prader-Willi Syndrome Obese?
This may appear as if I’m so lucky, that I can get to eat whatever I want. However, it is much more harder than you think. There have been situation where I’ve gotten so desperate for food. Often times, I have had to pick out foods from the bin to satisfy my Oliver twist stomach. I have also gone to extreme lengths of consuming uncooked or mouldy foods. Besides that, eating always has put people like me at a higher risk of obesity. I try as much as possible to stay away from junks, since exercise and workout can only do little.
You know why?
It’s because I have a very low muscle tone.
Therefore, it’s difficult for me to move my body around and get my muscles to work. That makes it hard for me to lose weight.
Many times, I get called a lot of names, that I can’t even mention. Two years ago, when I took my picture as a baby to class, a boy told me I looked like a rag-doll. I hate to admit that he’s right, since I have a poor muscle mass. Almond-shaped eyes, narrow head, thin upper lip, pale hair and skin, and a turned down mouth are my distinct features. I could have written something like “I have my dad’s mouth”, but I’m just so exceptional. I think I am ugly though, that’s what they say in school. Mama tells me I’m a pretty girl though. But isn’t that what a mum is supposed to say?
Can People with Prader-Willi Syndrome have Children?
Last week, I read through an health magazine which focused on Prader-Willi syndrome in one of its pages. In it, I saw that one of the features associated with the condition is undeveloped sex organs. That has been making me wonder if I’ll ever be able to have my own kids. I don’t want to think too much about it now as a young girl. When I grow up though, I hope that will be sorted out.
Did I mention earlier that I have a learning disability? You might then wonder how I got to write this with all its big words, and find it hard to recite a simple poem. I have a book, where I write learned new vocabs each day. This should tell you that I’m not totally dull, I just learn things slowly. Besides, I can communicate better by writing than speaking.
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Can you help me?
I hope to become a writer one day, to use words to inspire people like me who suffer from bullying. I don’t think I can keep up much longer with being picked on. Again, I don’t know how to explain my condition to aunt Olive and my mates in a way they will understand.
Can you help me do that?
University of Medical Sciences, Ondo State, Nigeria