#prader willi

People with Down syndrome

People with Fragile X

People with William’s syndrome

People with dyslexia

People with dyspraxia

People with dyscalculia

People with dysgraphia

People with Prader-Willi syndrome

People with PANS or PANDAS

People with aphasia

People with a TBI (traumatic brain injury)

People with chronic/early onset mental illnesses

People with cerebral palsy

People with FASD or were otherwise disabled via other substances in utero

And many, many more I may have forgotten to list (but still support and love, I will add more to my list)

You are all beautiful and wonderful, and you all deserve so more love, appreciation, acceptance and support. You are just as neurodiverse as the rest of us, and your voices deserve to be heard and amplified.

I would write a paper on this guy if I had the time, because honestly? He was ahead of his time.

Also late in his career he was the first person to publish a description of Prader Willi syndrome.

Imagine that not being the most influential thing you did.

💗 If you could hug anyone, who would it be?

I have a friend in Canada I haven’t seen in years I’d love to hug and I love her so much. 😟 Both of our lives have been insane. My divorce/moving out/transition and she got married/is immigrating to the US, so our relationship has kinda been put on the back burner as we both finally push our way into ‘adulthood’ now that we’re in our 30′s.

Thankfully her immigration is going well so far and things have calmed down on my end, so we want to meet up either this Halloween or she wants to care for me when I go in for top surgery. We’ll see what happens.

💥 What are some unpopular opinions that you have?

Funny, I was actually just thinking about this, but probably my thoughts on autism? I know there are a lot of high-functioning kids out there, especially on tumblr, and they love who they are and that’s great, but I’m of the mind that autism is something that maybe shouldn’t be cured exactly, but does need some form of treatment to lessen the symptoms of those with lower functions.

I’ve actually been talking with my aunt, who’s the mother of my autistic cousin. That’s where a lot of my animosity of autism comes from. But she explained to me that he also has Prader Willi, which is a genetic disorder. It has to do with some of his chromosomes missing. That on top of autism is what makes him as low-functioning as he is.

And by “low-functioning” I don’t mean like “oh no he doesn’t make eye contact”, I mean he’s non-verbal, doesn’t really sign either, doesn’t connect with people, has violent outbursts, and can’t even begin to take care of himself. He’s got an incredibly low IQ and will never get past being like a huge toddler. I love him, but it’s super distressing and I know it takes a toll on my aunt, and if I could give anything I’d cure him in a heartbeat.

💚 Who are you jealous of and why?

I was about to say “no one” but then I realized, y’know what? I’m jealous of my boss. He’s only 28 and running a dog daycare with his parents, which is my dream, and I don’t think he even really cares? He even said he’d probably sell the place and just “go on trips” if he could.

Like, fuck, sell it to me then!! This is my dream you bastard!!

⚡️ If you had any superpower, what would it be and why?

Shapeshifting. lmao

YOU CAN PROBABLY GUESS AS TO WHY.

(Hint: I’m trans.)

It sounds dreadful to have honestly. I feel so bad for the people affected by it.

Of course, these characters will have other characteristics to them besides their syndrome, to make them real as possible and to inspire people. Amy is a girl who likes music and has a curious personality. (One of the characters I’m considering making.)

In case you don’t know, Prader-Willi syndrome is a disorder in one of the chromosomes, it makes it so your brain doesn't register when your stomach is full. People with Prader-Willi syndrome are constantly craving food and are so desperate to eat even when they're full, which can unfortunately lead to death when the person is unsupervised.

It's so sad that something that these people feel they need so much can kill them. 

When a kid is born with Prader-Willi syndrome, the newborn’s metabolism is disrupted, resulting in physical and behavioral alterations in the youngster. Weak muscular tone and a reduced capacity to feed are among the symptoms. Behavior management and supportive therapy are used to treat Prader-Willi syndrome, which is a neurological disorder. Risk Factors There are no recognized risk factors for…

ASSOCIATION | “ Un petit pas “ - Syndrome de Prader-Willi

“Le syndrome de Prader-Willi est une maladie génétique rare et extrêmement complexe. Elle provoque un dérèglement de l'hypothalamus et de l'hypophyse qui entraîne une liste de symptômes très handicapants pour les personnes atteintes. Les symptômes les plus graves sont le développement de l'hyperphagie, l'absence de satiété ainsi que les troubles du comportement.”

Nolwenn Leroy soutient la recherche pour lutter contre le syndrome de Prader-Willi !

Tout comme avec “un petit pas”... Chaque pas en avant permet à une nouvelle personne de prendre conscience de cette maladie rare pour ensuite soutenir les malades et les chercheurs.

Sous le nom de "One Small Step", ce rassemblement solidaire créé en 2005 a vu le jour à Toronto au Canada. Une marche ayant pour but de sensibiliser et de récolter des fonds pour la recherche. Un impact grandissant au final des années qui a ainsi permis à cette initiative de s'exporter dans différents pays, unissant ainsi le plus grand nombre entre les Etats-Unis, l'Angleterre, l'Allemagne et la Belgique en passant par la France.

Parce que chaque nouveau petit pas, est un nouvel espoir...

Pour plus de renseignements sur les démarches et les actions de cette mobilisation et soutenir la recherche, rendez-vous sur ce site: ici.

Here are two short videos that talk about this syndrome: