Prader-Willi syndrome: A Rare Genetic Condition

Prader-Willi syndrome: A Rare Genetic Condition

“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.

You may also like: Progeria: A Rapid Aging Disease in Children

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?

Prader-Willi syndrome: the rare genetic condition

Writer: Ogunmola Hannah 
University of Medical Sciences, Ondo State, Nigeria
Hannah is a writer who is skilled at conveying not just messages, but emotions through words. She has always loved writing and she perfectly fits her medical knowledge into her articles. 
You can be rest assured of fascinating and insightful articles, as long as you watch out for her contents.
All in all, Hannah’s write-ups are a perfect description of engaging, lucid and enlightening.

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Ephehx DhorCass
Ephehx DhorCass
22 days ago

Wow. I’ve never heard of this before… Thanks for the enlightenment.

I’ll also love to know if people with this syndrome can give birth.

I’d browse it, but I love your writing style😁

Hann
Hann
Reply to  Ephehx DhorCass
21 days ago

Thank you so much🤗
To your question, I’ll start with this. No one with the syndrome has ever been able to give birth until some years ago, when it was reported that a woman had a child. Studies have shown too that birthing a child is possible, and it depends on the genetic type of Prader-Willi syndrome the person has. There’s more to that than I can explain here though
But usually, people with the syndrome are often infertile. The reason for that, as stated in the write-up, is as a result of underdeveloped sex organs. This makes them experience puberty later than usual.
Mostly, the males often have a small penis as well as cryptorchidism(when one or both testes fails to descend in the course of development).
The females, start period very late like in their 20’s or 30’s, and menstruation is often light and irregular.
Regardless of that though, sex hormone therapy can be administered to make them normal.
It should be noted too that people with Prader-Willi syndrome are not asexual. Hence, they can enjoy sexual activity, just like we normal humans.

tobbie
tobbie
21 days ago

Wow!!!
You are just so good.😁😋
I’ve learnt a new thing now…

Hann
Hann
Reply to  tobbie
20 days ago

That’s great!🤗
Thanks so much

Last edited 20 days ago by Hann