#Muscular Dystrophy

[charismaticcollector]

fellow terminally ill people, i love you.

i hope your happy if you decided to spend the rest of your life filling out a bucket list.

i hope your happy if you decided to spend the rest of your life partying until you drop.

i hope your happy if you decided to spend the rest of your life continuing as normal, working a job and getting groceries and the like.

i hope your happy if you decided to spend the rest of your life resting and relaxing as much as you can.

i hope your happy if you decided to spend the rest of your life trying to find a cure of some sort.

i hope your happy if you decided to spend the rest of your life aware and okay with the fact you are going to die.

i hope your happy if you decided to spend the rest of your life working towards the future, even if you might not see it.

i hope your happy if you decided to spend the rest of your life with your loved ones, giving them memories to last their lifetime.

i hope your happy if you decided to spend the rest of your life focusing on yourself, not letting anyone else hurt you again.

i hope your happy if you decided to spend the rest of your life seeing the world.

i hope your happy if you decided to spend the rest of your life staying at home with your cat.

i hope your happy if you decided to spend the rest of your life doing anything, because you deserve it.

[houstonxbreed]

Disabled people get criticized and called lazy for being unemployed but nobody wants to discuss how employers won’t hire us because we’re considered a “liability”. Many companies also refuse to accommodate individuals with disabilities. Let’s not talk about how the government takes away our lifesaving healthcare benefits if we make more than $2000 a month and this the reason why most disabled people live in poverty!!!

[rebirthgarments]

Disabled communities! Can we help Boshra raise enough funds to evacuate with her family? ❤️‍🔥

You can donate at bit.ly/boshrafund

Boshra is an 18 year-old with muscular dystrophy. Her condition has worsened due to the scarcity of resources during the genocide in Palestine, and because she was infected with Hepatitis A. Boshra’s father has deep vein thrombosis, a herniated disc, and other painful conditions. Boshra is living with her family of 20 in a tent in Rafah. The tent frequently flooded in the winter and is now incredibly hot due to the summer temperatures. The lack of clean water, food, housing, medical care, and everything makes these conditions intolerable for Boshra, who needs a special wheelchair and toilet for basic living.

She needs to evacuate ASAP, but cannot go alone. She needs the rest of her family with her. Boshra has raised enough money to register two people of the six she hopes to evacuate ASAP. She needs enough now for four more people, each at $5,000 USD. This means she needs at LEAST $20,000 USD more ASAP! This does not even account for the medical costs she will need for care after evacuation. We need donations now, any amount possible! 💵d

Please note that the fundraiser is in Canadian currency and the evacuation goal is in US dollars! You can use this converter to convert your intended donation to CAD before sending it in!

Please like, comment on, bookmark, and share this post to boost visibility! To access the QR code on a phone, screenshot the post, open the image in your photos, tap on the QR code, and go to the link it generates.

Image description (post 2): a young woman with a pink top and white hijab is shown against a pale yellow and blue background with navy blue text reading : "Help a disabled 18 year-old evacuate Gaza / Boshra needs support! Boshra has muscular dystrophy and is living in a tent in Rafah in horrible conditions. She needs immediate medical care. Her father is also disabled and needs urgent care. Her immediately family of six people need to evacuate ASAP together! SHORT-TERM GOAL: $20,000 USD bit.ly/boshrafund Please note that the GFM is in Canadian dollars. Convert the currency before donating!

[disabled-models]

Jillian Mercado, a model with muscular dystrophy, for Herring & Herring Magazine

[pinkcultgirl]

Withrelle (+ Elohime cameo)

[five-thousand-loaves-of-bread]

while me post most about nonverbal nonspeaking because intellectual/developmental disabilities, here something about become nonspeaking after/because medical crisis in 2022 & tracheotomy & muscular dystrophy, by alice wong.

overview: “This is a 2-3 minute audio letter to the late David Muir, a disabled man who invented the Passy Muir® Valve, an attachment that enables people with tracheostomies to speak. As a newly nonspeaking person, this letter allows me to share my thoughts on the desire to speak and reflections on silence.”

I paused to consider the phrase “dignity through speech.” There is dignity in silence too. Silence does not mean a person is voiceless, as there are millions of nonspeaking people who use gestures, sign language, writing, technology, and other means to communicate with the world.

I live in a world of silence that is not lesser or devoid of richness. My reality is just different. Silence forces me to be more thoughtful and intentional in considering what I want to say and how I say it when I type into my speech-to-text app, which listeners to this letter are hearing now.

…

The worlds of speech and silence intersect and overlap. Silence isn’t static or limiting. Silence is not an empty void. Silence has a landscape of its own. Silence has its own dimension, a space that enables another way of thinking and being. There is dignity in all forms of communicating.

[chuchu-sammika]

Y’know at this point I kinda don’t care if I drive people away with this.

I have a right to talk about my disability, and how much I hate it.

I’m tired of dealing with it. And I’m constantly uncomfortable with it.

It’s hard to live a fully happy life if your physically in discomfort almost all the time. It’s hard to be happy when you can’t do almost anything.

It hurts. It’s tiring.

[rhodoforwinter]

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A post shared by Lily Hi'ilani Okimura (@hiilanilily)

[bpod-bpod]

Mutant Muscle Model

The X-linked inherited genetic disorder Becker muscular dystrophy has an onset at around 30 years-of-age and with the first sign being heart failure in many. A new rat model of the disorder faithfully mimics human abnormalities, and demonstrates progressive cardiomyopathy enabling aspects of early disease to be examined

Read the published research article here

Image from work by Valentina Taglietti and colleagues

Univ Paris-Est Créteil, INSERMU955 IMRB F-94010 Créteil France

Image originally published with a Creative Commons Attribution 4.0 International (CC BY 4.0)

Published in EMBO Reports, October 2024

You can also follow BPoD on Instagram, Twitter and Facebook

[coolthingsguyslike]

[charismaticcollector]

post from bread inspired this post.

having my first language not available in AAC is so hard. i live in an english speaking country right now, so it is not a life threatening thing, but my family is looking to move back and that's so scary. if they do that i dont know if ill be able to use AAC at all. certainly not as easily. even if we dont move somewhere else english is by far the main AAC language and that worries me.

[houstonxbreed]

My chronic illness has turned me into such an angry person on the inside. If you met me in real life you’d never know though. I hide it because I know people don’t wanna be around someone who’s alway’s negative/angry. I don’t wanna be more of a burden than I already am. I’m also embarrassed at how devastated I am about life. My whole life is affected by this disease and it sucks because all of this is out of my control. I feel like my body hates me. I’m just upset and grieving my old life and the old me. I miss being able bodied and just enjoying life.

[mindblowingscience]

It is the first gene therapy approved to treat this debilitating and fatal disease found almost exclusively in boys. Emma Ciafaloni is a neuromuscular neurologist with the University of Rochester Medical Center (URMC) neurology department and Golisano Children’s Hospital, and director of the UR Medicine Duchenne Muscular Dystrophy Clinic, which treats boys with Duchenne muscular dystrophy (DMD) from across upstate New York. Ciafaloni has been involved in DMD clinical research for decades and URMC was one of first three sites in the nation to start dosing patients in the phase 3 clinical trial for the new gene therapy. The study, called EMBARK, has since expanded to additional sites in North America, Europe, and Asia. Ciafaloni also served as chair of the independent Data Safety and Monitoring Board for the early phase clinical trials of the therapy. The new drug—delandistrogene moxeparvovec-rokl—is being developed by Sarepta Therapeutics and marketed under the name ELEVIDYS.

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[jerrylewis-thekid]

About this special moment on the 15th annual Jerry Lewis Labor Day Telethon for Muscular Dystrophy in 1980 at the Sahara ♡ . “I’ll tell you one thing that I could never ever forget. Mary Passalacqua was a victim of neuromuscular disease, and I went to the hospital to see her in San Francisco, hoping that she would be better. And she was, she was skeleton-like. She was dying so badly. And we funded a thing called plasmapheresis, which flushes the bad blood out and puts new blood in, and she had been given the last rights when I arrived there. When I arrived there she was the epitome of what hero worship is, because she saw me and she, she practically came alive. And then I left, I said good-bye, never though I’d see her again, and then I get a letter from her two months later. Thanks so much for visiting me: it made the difference. I’m doing well. I’m fine. And P.S. my dream is to one day dance with you. I read the letter on television in front of eighty million people. And then I pointed to the curtain and there she came. She walked out and she and I danced dead center of that stage. There wasn’t a dry eye in the house. She’s alive and well because of our funding the plasmapheresis syndrome. And that’s probably one of the most unforgettable things, because I was trembling so, trying to dance and be cool. It was so important to her and to everyone else that was a victim. It was a special moment for people in trouble.” — Jerry Lewis

It's clear he's struggling not to cry. He fulfilled this woman's wish. He wasn't a monster, monsters are the flock of idiots who judge him without really knowing him.

Thanks for living Jerry. May you be blessed wherever you are.

[sadapples]

the disability pride flag! It’s not disability pride month, but I felt a little disability pride is in order for all the disabled folks who feel like they aren’t enough. YOU ARE DOING AMAZING!! Despite all capitalist, ableist, racist, queerphobic, fatphobic obstacles in your way, you are still alive and doing what YOU need to do in order to live. That’s pretty badass. People, and oppressive systems don’t expect you to be proud, or happy, because when you’re disabled, it’s supposed to be tragic and sad. Well you are not tragic, or sad, or anything else these people who know nothing about you say you are. Being proud and disabled is an act of rebellion against these oppressive systems that we are forced to live under. I’m very proud of you, keep doing what you’re doing love 💗

[skys-archive]

My elementary school was very small, I think like 350 people or so. There were only two classes for every grade level once you got to 2nd grade.

When I was in third or fourth grade a kid moved there who had muscular dystrophy. We had an entire assembly about it, I think it was just my grade. He was the only disabled kid in our school besides the people in "special ed" classes. (There was a special name for them, like the "blank" room kids or something. I believe he was the only physically disabled student.

I didn't think of it now, but it was kinda strange to me how it was treated. They gathered all of my grade into the gym, sitting on the floor. They brought him up to the stage that was at the front and his mother explained what muscular dystrophy was, how it affected him and what was happening inside his body. She explained that he couldn't play at recess the same way everyone else could, but he still enjoyed playing games. My classroom had a few games we brought outside every day, like connect four or big checkers, stuff like that so some of us could play with him.

Of course it's not a bad thing to educate people on disability. But it feels like they almost made it a spectacle. I know I wouldn't like it if someone brought me in front of 50 kids and explained my entire medical history and condition to them. I'm not sure how he felt about it because I wasn't friends with him.

I just wish they had been different. Having the stuff was great, it normalized it in a way. I'm sure it helped keep him from feeling excluded. But wouldn't it feel excluding to be brought in front of all of your peers, half of whom aren't even in your class, and talk about you like a broken machine? I feel like they could've just talked to the class. Tell us he had a medical condition and couldn't do a lot of the physical things we could, but we had other ways to play with him. That's all it would take. We don't need to know all about his medical condition, that's something he can tell us if he wants to.

I was became disabled as a kid, but I was still able to do most things at the time and it just didn't cause too many issues yet. I just hurt a little when I did physical activity, I didn't think much of it. I didn't really think that we were similar, so I never got to know him.

Sometimes I wonder how he's doing, and I hope he has some good things going for him. I wish I had gotten to know him more than the few times I played with him at recess. I just hope everything is going well.