#Muscular dystrophy symptoms

[missionwalk]

Muscular Dystrophy: What You Need To Know?

If your or your child’s muscles are becoming weak and less flexible over time, you better get a check-up done by a doctor for muscular dystrophy.

A muscular dystrophy is a group of diseases that affects the muscles, and only if you lack this problem in your genes will your muscles continue to be strong. The condition may show symptoms early in childhood for some people, while others do not have symptoms until they reach their teenage years or their middle age.

There are various types of muscular dystrophy, and each is distinct according to the following:

The genes that create it,

The affected muscles,

The person’s age when the first symptoms appeared,

How quick is the progression of the disease?

Here are 9 of the major forms of this disease:

* Duchenne muscular dystrophy is the most common type and mostly affects boys. The symptoms start between ages 3 and 5.

* Becker muscular dystrophy is the milder form of Duchenne, with symptoms starting between ages 11 and 25.

* Myotonic is the most common form in adults.

* Congenital muscular dystrophy occurs at birth or early infancy.

* Limb-girdle muscular dystrophy causes weakness and wasting of the muscles in the arms and legs.

* Facioscapulohumeral muscular dystrophy affects the muscles of the face, shoulders, upper arms and lower legs.

* Distal muscular dystrophy is characterised by wasting and weakness of voluntary distal muscles, which are farther from the centre of the body, such as lower arms, hands, legs and feet.

* Emery-Dreifuss muscular dystrophy affects the skeletal muscles and the heart.

Muscular dystrophy symptoms usually appear either during childhood or in the teen years. Generally, a child with this disease:

- frequently loses balance and collapse

- have weak muscles

- experience muscle cramps

- have difficulty rising from the bed, climbing stairs, jumping or running

- walk with short steps and in clumsy, swaying motion; walk on their toes

- have curved spine (scoliosis)

- have eyelids hanging down limply

- have heart problems

- experience difficulty in breathing or swallowing

- have vision problems

- feel weakness in the muscles of the face

Currently, no clear muscular dystrophy treatment is yet to cure the disease. However, many treatment plans and interventions could help the patient improve their symptoms, thus making life easier for the child and the family.

Here are some doctor-recommended treatments, the application of which should be based on what type of muscular dystrophy a person is suffering from.

1. Physiotherapy (physical therapy) uses different exercises, including stretches, to keep the muscles strong and flexible.

2. Occupational therapy teaches the patient to make the most use of what their muscles can do. Also, they will learn to use wheelchairs, braces and other devices to aid them in their daily functions.

3. Speech therapy trains the person with speech and language problems due to a weak throat and facial muscles to speak more clearly.

4. Respiratory therapy helps restore or improve lung functions; helps with difficulty breathing.

5. Medications to help ease symptoms, such as:

* injection medication to help increase dystrophin production

* anti-seizure drugs to help lessen muscle spasms

* medications for blood pressure to help with heart problems

* immunosuppressant drugs to slow down the damage to muscle cells

* steroids to slow down damage to muscle cells; also help the patient to breathe easily

6. Surgery can help with various muscular dystrophy complications, like trouble swallowing or heart problems.

Although MDs of any type cannot be fully cured, any of the above lists can be successful treatments of muscular dystrophy (therapies, injections, medications, surgery). They can help lengthen the time a child or adult with the disease can remain mobile. They also help strengthen the patient’s heart and lung muscles.

It is quite difficult for parents to see their child lose their muscle strength and be unable to do things other children can. Managing muscular dystrophy is challenging, but don’t let it stop your child from enjoying life.

If you have questions or need more information about muscular dystrophy, please contact Mission Walk today. You need to fill out our online contact form and send it, and one of our team members will be happy to get back to you.

[cripplecharacters]

Where to Start Your Research When Writing a Disabled Character

[large text: Where to Start Your Research When Writing a Disabled Character]

So you have decided that you want to make a disabled character! Awesome. But what's next? What information should you decide on at the early phrase of making the character?

This post will only talk about the disability part of the character creation process. Obviously, a disabled character needs a personality, interests, and backstory as every other one. But by including their disability early in the process, you can actually get it to have a deeper effect on the character - disability shouldn't be their whole life, but it should impact it. That's what disabilities do.

If you don't know what disability you would want to give them in the first place;

[large text: If you don't know what disability you would want to give them in the first place;]

Start broad. Is it sensory, mobility related, cognitive, developmental, autoimmune, neurodegenerative; maybe multiple of these, or maybe something else completely? Pick one and see what disabilities it encompasses; see if anything works for your character. Or...

If you have a specific symptom or aid in mind, see what could cause them. Don't assume or guess; not every wheelchair user is vaguely paralyzed below the waist with no other symptoms, not everyone with extensive scarring got it via physical trauma. Or...

Consider which disabilities are common in real life. Cerebral palsy, muscular dystrophy, stroke, cataracts, diabetes, intellectual disability, neuropathy, multiple sclerosis, epilepsy, thyroid disorders, autism, dwarfism, arthritis, cancers, brain damage, just to name a few.

Decide what specific type of condition they will have. If you're thinking about them having albinism, will it be ocular, oculocutaneous, or one of the rare syndrome-types? If you want to give them spinal muscular atrophy, which of the many possible onsets will they have? If they have Ehlers-Danlos Syndrome, which one out of the 13 different types do they have? Is their amputation below, or above the knee (it's a major difference)? Not all conditions will have subtypes, but it's worth looking into to not be surprised later. This will help you with further research.

If you're really struggling with figuring out what exact disability would make sense for your character, you can send an ask. Just make sure that you have tried the above and put actual specifics in your ask to give us something to work with. You can also check out our "disabled character ideas" tag.

Here are some ideas for a character using crutches.

Here are some ideas for a character with a facial difference (obligatory link: what is a facial difference?).

If you already know what disability your character is going to have;

[large text: If you already know what disability your character is going to have;]

Start by reading about the onset and cause of the condition. It could be acquired, congenital, progressive, potentially multiple of these. They could be caused by an illness, trauma, or something else entirely. Is your character a congenital amputee, or is it acquired? If acquired - how recently? Has it been a week, or 10 years? What caused them to become disabled - did they have meningitis, or was it an accident? Again, check what your options are - there are going to be more diverse than you expect.

Read about the symptoms. Do not assume or guess what they are. You will almost definitely discover something new. Example: a lot of people making a character with albinism don't realize that it has other symptoms than just lack of melanin, like nystagmus, visual impairment, and photophobia. Decide what your character experiences, to what degree, how frequently, and what do they do (or don't do) to deal with it.

Don't give your character only the most "acceptable" symptoms of their disability and ignore everything else. Example: many writers will omit the topic of incontinence in their para- and tetraplegic characters, even though it's extremely common. Don't shy away from aspects of disability that aren't romanticized.

Don't just... make them abled "because magic". If they're Deaf, don't give them some ability that will make them into an essentially hearing person. Don't give your blind character some "cheat" so that they can see, give them a cane. Don't give an amputee prosthetics that work better than meat limbs. To have a disabled character you need to have a character that's actually disabled. There's no way around it.

Think about complications your character could experience within the story. If your character wears their prosthetic a lot, they might start to experience skin breakdown or pain. Someone who uses a wheelchair a lot has a risk of pressure sores. Glowing and Flickering Fantasy Item might cause problems for someone photophobic or photosensitive. What do they do when that happens, or how do they prevent that from happening?

Look out for comorbidities. It's rare for disabled people to only have one medical condition and nothing else. Disabilities like to show up in pairs. Or dozens.

If relevant, consider mobility aids, assistive devices, and disability aids. Wheelchairs, canes, rollators, braces, AAC, walkers, nasal cannulas, crutches, white canes, feeding tubes, braillers, ostomy bags, insulin pumps, service dogs, trach tubes, hearing aids, orthoses, splints... the list is basically endless, and there's a lot of everyday things that might count as a disability aid as well - even just a hat could be one for someone whose disability requires them to stay out of the sun. Make sure that it's actually based on symptoms, not just your assumptions - most blind people don't wear sunglasses, not all people with SCI use a wheelchair, upper limb prosthetics aren't nearly as useful as you think. Decide which ones your character could have, how often they would use them, and if they switch between different aids.

Basically all of the above aids will have subtypes or variants. There is a lot of options. Does your character use an active manual wheelchair, a powerchair, or a generic hospital wheelchair? Are they using high-, or low-tech AAC? What would be available to them? Does it change over the course of their story, or their life in general?

If relevant, think about what treatment your character might receive. Do they need medication? Physical therapy? Occupational therapy? Orientation and mobility training? Speech therapy? Do they have access to it, and why or why not?

What is your character's support system? Do they have a carer; if yes, then what do they help your character with and what kind of relationship do they have? Is your character happy about it or not at all?

How did their life change after becoming disabled? If your character goes from being an extreme athlete to suddenly being a full-time wheelchair user, it will have an effect - are they going to stop doing sports at all, are they going to just do extreme wheelchair sports now, or are they going to try out wheelchair table tennis instead? Do they know and respect their new limitations? Did they have to get a different job or had to make their house accessible? Do they have support in this transition, or are they on their own - do they wish they had that support?

What about *other* characters? Your character isn't going to be the only disabled person in existence. Do they know other disabled people? Do they have a community? If your character manages their disability with something that's only available to them, what about all the other people with the same disability?

What is the society that your character lives in like? Is the architecture accessible? How do they treat disabled people? Are abled characters knowledgeable about disabilities? How many people speak the local sign language(s)? Are accessible bathrooms common, or does your character have to go home every few hours? Is there access to prosthetists and ocularists, or what do they do when their prosthetic leg or eye requires the routine check-up?

Know the tropes. If a burn survivor character is an evil mask-wearer, if a powerchair user is a constantly rude and ungrateful to everyone villain, if an amputee is a genius mechanic who fixes their own prosthetics, you have A Trope. Not all tropes are made equal; some are actively harmful to real people, while others are just annoying or boring by the nature of having been done to death. During the character creation process, research what tropes might apply and just try to trace your logic. Does your blind character see the future because it's a common superpower in their world, or are you doing the ancient "Blind Seer" trope?

Remember, that not all of the above questions will come up in your writing, but to know which ones won't you need to know the answers to them first. Even if you don't decide to explicitly name your character's condition, you will be aware of what they might function like. You will be able to add more depth to your character if you decide that they have T6 spina bifida, rather than if you made them into an ambiguous wheelchair user with ambiguous symptoms and ambiguous needs. Embrace research as part of your process and your characters will be better representation, sure, but they will also make more sense and seem more like actual people; same with the world that they are a part of.

This post exists to help you establish the basics of your character's disability so that you can do research on your own and answer some of the most common ("what are symptoms of x?") questions by yourself. If you have these things already established, it will also be easier for us to answer any possible questions you might have - e.g. "what would a character with complete high-level paraplegia do in a world where the modern kind of wheelchair has not been invented yet?" is much more concise than just "how do I write a character with paralysis?" - I think it's more helpful for askers as well; a vague answer won't be much help, I think.

I hope that this post is helpful!

Mod Sasza

[dissociacrip]

anyway um. shoutout to disabled people who move their bodies in ways that are considered "wrong" or "abnormal" regardless of the cause or how it's classified. and this isn't limited to just ambulation.

paralysis. dystonia. gait abnormalities. people with muscle weakness and/or atrophy. people with brain damage. rotational differences. clubfoot. knocked knees. other limb and bodily differences. functional deformities that affect movement. tissue contracture. muscular dystrophies. spasticity. impaired proprioception, balance, and/or coordination. chronic pain. spinal disorders. dyspraxia/DCD. apraxia. ataxia. dystaxia. tourette's syndrome and other tic disorders. conversion symptoms. tremors. neurodegenerative disease. degenerative bone diseases. joint instability. myoclonus. parkinsonism. tardive dyskenisia. various other neurological problems.

...and the list goes on.

personally i feel a bit surreal when my body not doesn't always move in the ways i want it to because that straightforward connection that's there for abled people has been disrupted in a myriad of ways. but no one is gross, ugly, or scary for being unable to move their body in ways that society considers "normal" and "healthy." no one deserves to be gawked/stared at or treated like they're subhuman because of the way their body moves.

it's okay for us to exist.

[cxyotl]

bumble asked me to post it here so heres my evidence for cschlatt having muscular dystrophy as his canon disability

-cannot swim or run, no muscle strength

-weak heart and lungs, had that for a while even before his stroke accordin to ponk and fundy’s accounts

-he was 21 years old, the avg lifespan for a person w MD is like 18-30. mind you, cschlatt was also self medicating w alcohol, so that probably fucked him up a lot more too.

-always in pain. brother did not get a break. he had no energy ever why do yall think he was turning down cq’s attempts at romance so much. lord.

-protein supplements, which is a common way to manage MD symptoms

i think that the reason it was so unclear whether he had a stroke or a heart attack in canon was cause it was both. he had a heart attack primarily, but he was so overworked and stressed out by it all that the stroke happened too. hence the toast comment.

[anachronisticmech]

S1 Archival Staff Disability Headcanons

[plain text: s1 archival staff disability head canons]

[i will do more characters soon, but this is just so i dont forget stuff for the fic i am currently working on, which is set during s1!]

-> Jon Sims:

[plain text: arrow Jon sims]

disabilities: autism, ocd, pots, cfs, fibro, hEDS, short sightedness, crohns, dermatillomania, scoliosis, npd

aids: aac device, cane, rollator, compression socks, stim toys, sound-proofing headphones, feeding/ng tube (gets g tube post canon)

extra: runs out of spoons very easily, often has to lay in document storage in the middle of the day to get enough energy to continue on, has very bad brainfog and resorts to writing almost everything he needs to remember on his hands, has a lot of marks from picking at skin and having eds skin, has a comfort moth pendant from martin, a comfort panda plushie from tim, and a comfort ace ring from sasha, fluent in BSL, spins are moths, owls, books, languages, classic literature, and pride and prejudice

-> Martin Blackwood:

[plain text: arrow Martin blackwood]

disabilities: autism, cfs, gad, short sightedness, otosclerosis, lupus, pots, fibro, endo, pots, vitiligo

aids: aac device, stim toys, chewellery, hearing aids, immune system control medication, anti-depressants, compression socks, rollator, electric wheelchair

extra: has very complicated feelings about helping himself because of his mum, fluent in BSl, always keeps spare heatpacks and icepacks and panadol with him incase anyone needs it, spins are bears, koalas, gravity falls, strawberry shortcake, mlp (from g1 to fim) and the care bears, has a comfort tenderheart bear plushie

-> Tim Stoker:

[plain text: arrow Tim stoker]

disabilities: autism, adhd, ocd, psychosis, aom, pots, hEDS, bpd, bipolar disorder, dyslexia

aids: hearing aids, compression socks, chewellery, wheelchair, elbow crutches, port, stim toys, anti-psychotics

extra: often hurts himself by trying to do things that harm his body (sasha and martin cannot count the amount of times he has started vouging, only to then end up in his wheelchair in the breakroom with ice packs on his knees), spins are drag, norse mythology, and splatoon, has a comfort inkling plushie from danny, and a comfort polyam flag ring from sasha, fluent in BSL

-> Sasha James:

[plain text: arrow Sasha james]

disabilities: autism, ocd, cfs, gad, pots, crohns, muscular dystrophy, vEDS

aids: cane, crutches, compression socks, stim toys, chewellery, feeding/peg tube, port

extra: doesnt have flare-ups often, or even really bad symptoms, spins are medical science, armadillos, horror, coraline, and european mythology, fluent in BSL, has a comfort armadillo plushie from tim, often reads statements like theyre horror fiction

[briarpatch-kids]

may i ask what the difference between ME and mitochondrial disease is? i’ve heard they’re linked but i’m not sure, and the internet didn’t have much info

ME is chronic fatigue syndrome, so basically a collection of symptoms surrounding chronic fatigue and symptoms caused by chronic fatigue. I'm not sure if there's a known cause yet, I've seen things suggesting it's autoimmune, some saying it may be mitochondrial in nature, and other theories. I don't know a huge amount about it because I don't have it, but I do know a lot of people with mitochondrial disease get misdiagnosed as having severe ME/CFS because of how similar they can look. I'm not the best source on ME/CFS and I suggest you ask people who have a severe case more about what that entails.

For mitochondrial disease, which I know more about because I have one of them, they're a collection of usually genetic diseases that all have the same basic cause: mitochondria are broken, missing parts, or like in my case, just plain missing. This causes issues in energy production, and depending on where your mitochondria are broken, the percentage that are broken, and how they're broken, you can have different symptoms. (Is there enough energy to run your eyes, your digestive system, etc)

Most mitochondrial disorders cause fatigue, but they can also cause a lot of other things. For instance, there's a type that causes seizures that gradually get more and more severe as more mitochondria in the brain are broken, or one that causes you to lose vision and hearing. Or my type of mitochondrial disease, myopathy, that looks like muscular dystrophy but with bonus content like gastroparesis, heart wall thickening, and other symptoms that are related to "muscles don't work." One of the "Get checked" flags for mitochondrial disease is 3 or more "systems" having problems. (Like muscular, neurological, and heart. Or hearing, vision, and digestive system. Stuff like that) CFS can also cause bonus symptoms like gastroparesis, further complicating things.

Mito is often considered more progressive than ME is, but that's more of a CAN progress verses a WILL progress sort of issue. (Meaning mito will almost always get worse over time, but ME/CFS can also progress in some cases but not others)

All in all, both mito and me/cfs are both not well studied, not well understood, and have so much variation within them that its hard to discuss the differences in a way that's not like "well they're different, except when they often overlap in severity, symptoms, progression, and other traits." Most of the time you need a muscle biopsy to truly tell the difference. Someone could just have droopy eyelids and occasional seizures but it's mitochondrial, or someone could be bedbound with a feeding tube and chest port and have ME. We are all tired as hell either way and want better medical care.

[ghostonly]

Disability, Cures, and the Complex Relationship Between Them

So, I've been thinking a lot lately about cures, just in general, as a concept. I've been watching the excellent videos of John Graybill II on Youtube, where he demonstrates his day-to-day movements as someone with Limb Girdle Muscular Dystrophy 2a, and updates every year to show how it progresses. I'm currently writing a character with LGMD and wanted to be sure I understand exactly how it impacts his daily life and movement limitations, so this has been extremely helpful, because there's only so much you can glean from a list of symptoms.

Quick Background on John Graybill II

John started this series in 2007/8, back when he was about 30 years old. He was diagnosed when he was 17, back in '95, and, when he started this series, he was very much fighting his LGMD, in a constant struggle, and angry with himself and the condition. In this, he directed a lot of toxic positivity at himself and became convinced he could defeat LGMD with positive thinking, healthy diet, etc.

Now, while I respect that there are positives to this (exercise and eating well is rarely a bad thing, and the stretches he does almost certainly have helped him to lengthen his time with mobility), there is also something to be said for accepting a physical disability for what it is. In later videos, he clearly had shifted that mindset toward something a bit more realistic. Where, in the beginning, he had been certain that he would somehow heal himself through positivity and such, he later says that may never happen, and he wants to enjoy doing what he can, while he can, instead of being in a constant battle with himself.

That being said, he does run an organization (I believe he runs it?) that seeks to fund research and find a cure for muscular dystrophy of this particular variety. And, while watching his videos from oldest to newest, I've been grappling with my complicated feelings regarding cures.

Why Are Cures a Complicated Topic?

The reason cures are a complicated topic is because, for a lot of us, cures are unlikely to ever be developed - at least not within our lifetimes and probably not within our children's lifetimes. Many physical disabilities and disorders are just too rare, too unknown, the cause unclear. For us, we have to just accept that this is something we have to live with, for better or for worse.

The other reason is that people are often proponents of seeking cures for things that don't need curing, such as autism. Obviously I haven't polled every autistic person alive, but I have known and read content from countless autistic people. I don't think I've ever found a single autistic person who wanted to be cured of autism. In fact, I would say most of them were pretty vocally oppositional toward the idea, for good reason. 90% of the difficulty that comes with being autistic comes from societal ableism and accessibility issues on a systemic level.

My Thoughts on Cures

I can't speak for everyone with incurable physical disabilities that are unlikely to have a cure developed, nor can I speak for everyone who's autistic, but, speaking for myself, talk of cures can be extremely uncomfortable to me.

I asked myself why. Because, in reality, there shouldn't be anything wrong with researching a cure for something like LGMD. It causes people great difficulty and often great pain. For certain variants, it causes early death.

And, after reflecting on my feelings for a long while, I think I've figured out why the word and the concept bothers me so much.

Cures Are Often Used as a Crutch for Ableism

There are, broadly speaking, two camps of people who want cures:

People who want to improve their quality of life, the quality of life of someone they love, or who want to prevent future generations from the difficulty they or a loved one have been dealt

People who are uncomfortable with disability and want it to go away

This is a venn diagram with a large overlap. The number of people who are purely in camp 1 is much smaller than you might hope.

Why Is Wanting to Get Rid of Disability a Problem?

Okay so here's why camp 2 is a problem. Let's say, for the sake of the argument, that every disability has a possible cure that just has to be found. Why is that a problem? Disability is bad, right?

Wrong! Disability is completely amoral - it has no goodness or badness. It just is. Ideally, some of the more painful disabilities could be cured to prevent pain and early death. However, the problem with viewing disability, in a vacuum, as bad, is that your opinion of the disability will inevitably rub off on the people with the disability.

When you view disability as an adversary, you view disabled people as a problem to solve.

Just as John Graybill II explains in one of his stair-climbing videos a few years into the series, he had spent so long trying to fight the progression of the illness, that he had spent every day in passive anger and frustration. He had forgotten to just enjoy his ability to climb stairs. And he said that he wished he could go back and just enjoy it - stop timing himself on his stopwatch and trying to beat his times. Basically, even as a disabled man himself, he had spent so long looking at his disability as a problem to fix, he hadn't been properly enjoying being a person and just living his life.

When you apply the same fix-it approach to someone who doesn't have a disability, it's equally easy for them to forget the personhood of the people with disabilities. Only, instead of it being directed at themselves, it is directed at others. They push their disabled loved ones to just try harder, just push harder and for longer, eat right, try this, do that, think right, take vitamins - if you just try hard enough, you can beat this!

Except... most of the time, you can't.

The idea that doing everything right will allow you to beat a chronic illness is just ableism in a scientific hat. You're afraid - of being disabled, of the consequences of disability, of someone you love being different, of them looking weird, becoming weird, being seen in public yourself or with someone disabled, of being uncomfortable, of having to put in more energy and effort into helping someone with special needs.

The list of things people are afraid of is endless, and the positive spin on that ableism is simply fighting to fix it.

Make it go away so that you don't have to deal with it anymore.

And then, when you take that approach and apply it to the countless disabilities that don't have cures and may never have cures, you end up with boatloads of people who are seen as problems to solve. They feel like a burden to their family and friends. They're pushed to do what hurts and will actually cause more long-term problems for them by forcing themselves to do things they shouldn't be doing - things that damage their bodies, which aren't meant to do those things anymore.

The Long-Term Consequences of Ableist Pushes for Cures

So back to that argument about all disabilities being curable with time: what's the problem with making some disabled people uncomfortable if, one day, all disability is cured and there are no more disabled people?

Well, the simple answer is this: that's never going to happen, and if you think that way, you're a eugenicist.

Even if every disability is curable with time, the ends do not justify the means - the means being to humiliate and degrade disabled people by treating them like problems.

And it would take decades, maybe even centuries, of those means to even reach the ends. But we'll stop that argument there, because there will never be an end to disability.

Why There Is No End to Disability

So, the thing about disability, is it will never cease to exist. Even if it was a good goal to have, which it isn't, it's never going to happen.

Disability is often caused by gene mutation. At one point, none of the gene mutations for our current physical disabilities existed. They developed. And, just as the current disabilities developed over time and with gene mutations, so will new and different ones. Even if we cured all of the current disabilities, there would always be new ones, likely developing as fast as we can cure the existing ones.

Additionally, a lot of disability is not congenital. People who are in accidents and lose legs will never be able to regrow those legs. Even if eugenicists managed to prevent any "deformed" babies from being born without limbs, people would lose them from accidents and infection, and all kinds of things.

In a world where all congenital disabilities were cured, what quality of life do you expect people in wheelchairs to have?

Because I think I can confidently say that, if everything congenital were cured, a day wouldn't pass before accessibility laws were thrown out the window. We would be returned to the days where disabled people are hidden away and can't leave the house - kept as shameful secrets by families who resent them, or shown off as paragons of strength and virtue when/if they're able to be fitted with a working prosthetic.

Neither of these outcomes is positive.

The Slippery Slope of Cure Ideology

So, on to another argument: there is a lot of danger in letting cure ideology go unchallenged.

I want to clarify again, that I don't think we should never research cures. I'm challenging, specifically, the social movement behind cures that is often driven by eugenicism and ableism.

So, why is it dangerous to let that exist? Well, let's look back at the reason I mentioned that people are in camp 2: they are afraid of being uncomfortable. They are afraid of what's different from them. They view difference as a problem to be solved - a disease or a disorder.

You can see this exact principle in action when people fight for a cure for autism. It's being fought for by the allistics who know people with autism, not usually the autistics themselves. It's being fought for by parents who are angry that their child is different or won't look them in the eyes. They see them as an obstacle to overcome, not as a person who has a different way of socializing. Even in the best case, where they see them as a person more than a problem, they are seen as a person with a wrong and disordered way of socializing.

Imagine, for a moment, that there was an allistic trait that people treated as disordered or wrong the way an ableist might treat hand-flapping or lining up toys. Let's take a direct comparison - something one does when they're happy - like laughing. Imagine, for a moment, that something you do when you're joyful, is treated like a maladaption. Perhaps, in this alternate universe, smiling is normal, but laughing is disturbing to people. You spend your life desperately trying to repress your laughter, hiding your joy, even though it's the most natural thing in the world to you. How would you feel hearing people chanting positively, with smiles, taking donations, running marathons and dancing, all for a cure for laughter?

Really, really, genuinely think about it.

Imagine living your entire life like that.

This doesn't just relate to autism.

The reason this ideology has to be challenged is not just by the concrete example of people trying to cure autism, it's the root of the ideology, that different is bad. That the majority being uncomfortable means the minority is wrong and needs to be fixed.

Is this ringing any other bells for you? Because autism isn't the only thing I desperately hope they don't find a genetic link for.

If fighting for a cure for anything people deem different and weird enough goes unchallenged, people will attempt to cure anything they don't like. Like being gay. Or being trans.

And I'm not talking about conversion camps that try to brainwash you into thinking you're not gay. I'm not talking about the abusive Christian approach, I'm talking about the eugenicist scientist approach.

If a genetic link were found or if there was some kind of actual biological difference, that could mean people trying to test fetuses for the "homosexuality gene" or whatever. It would give a concrete path for eugenicists to try preventing gay and trans people from ever even being born.

And, if that biological connection is found, how long do you think it would take for people to start excitedly pushing for a cure to "homosexuality" or "transgenderism"?

What is the point of this post?

It's food for thought.

I want, not only my abled followers, but my disabled ones as well, to reflect on how they feel about cures - about being cured or about curing others.

I want you all to ask yourself, am I in camp 1 or camp 2?

Your goal in supporting a cure should be to prevent death, to prevent pain that cannot be overcome through systemic support and accessibility, to help people live lives with quality.

Your goal in supporting a cure should never be to remove something that makes you uncomfortable. If you're abled, it should never be to make your life easier or alleviate your feelings of guilt, resentment, or stress. It should never be to make people normal, especially not people you care about.

And, on a final note, remember that the things you see in a disability you know nothing about may not have anything to do with reality. If you see a disability for the first time and you immediately wish for a cure for it, simply because it looks painful, maybe find out if it actually is first. Sometimes we attribute pain and misery to things that are no big deal to the people dealing with them. And, in doing so, we also attribute heroicism and virtue to the people dealing with them - which they did not ask for.

Don't make disabled people into a project. Don't use them as inspiration porn - putting them on a pedestal and using them as proof that "anything is possible."

Treat disabled people with dignity and respect.

Treat disabled people as people, with or without them jumping through every hoop you think will make them better.

Think about how fucking annoying it would be if, every time you got up from a chair in public, everyone stared at you, or even praised you for it. How uncomfortable would you be if no one ever saw you as yourself but as some kind of ambassador for strong, amazing people who are so so so cool because they can tie their shoelaces.

Think about how fucking infuriating it would be if every tenth person you walked past turned to you, looking sad, and said "god bless you."

Think about how old that would get, and how fast.

That's all. Just think about it.

[disabledfurry]

it's like, on top of experiencing the symptoms of progressive muscle atrophy, like choking all the time drooling losing my ability to walk on my own my heartbeat not wanting to regulate itself my chest muscles and stomach and bladder and eyes all not wanting to work and the subsequent not being able to breathe and fearing i am going to fucking die and not being able to think or talk and the urological infections, my spine getting worse, my legs always hurting, i can't even blow my nose or laugh and i'm constantly fighting to keep my fucking eye open and i can't even sit up and i feel like i'm only half awake 24/7, i also have to deal with the ableism and disfiguremisia (and the fucking medical trauma and the dismissive doctors and the doctors who believe me but won't or can't do anything too)

today i read and watched a lot of different things about disability and ableism and disfiguremisia

in one of the videos was a clip of jerry lewis responding to former mda telethon kids who espouse it for being exploitative. his attitude toward them was not just dismissive but pitying, and he spoke of himself as a "hero" to kids with muscular dystrophy

it also came up that he had written an article about how if he had muscular dystrophy, and he said that people with it were "half of a person, not whole". he also said a lot of other really fucking terrible things

but that one line made me think about all the bad media portrayals and the historic discrimination of people with conditions like mine, especially with visible differences, intellectual disability, or brain damage, and how othered i feel everywhere, no matter where i go or what i do, with able bodied people and other disabled people alike, as if i have no place anywhere at all. i feel as if i am ugly, unclean, and depressing, unwelcome and wrong and unwanted. i do not feel like a person, do not feel like i can *be* a "person" the way other people are people; i feel like the societal idea of a "freak". because these are the only ways i've ever seen people like me portrayed and talked about, and the only way i've been treated.

[johnstevenmullaly]

The Impact of Gene Therapy on Modern Medicine

Gene therapy is a groundbreaking approach in medical science. It offers hope to many patients suffering from genetic disorders and other diseases. The aim of gene therapy is to provide long-lasting and potentially curative treatments by targeting the root cause of these ailments at the genetic level. This approach highlights a significant transformative impact on modern medicine.

Gene therapy involves introducing, altering, or removing genes within an individual's cells to treat or prevent disease. The two primary types are somatic gene therapy, which targets nonreproductive cells, and germline gene therapy, which affects reproductive cells and can be passed on to future generations. Techniques such as viral vectors, which deliver new genes to cells, and CRISPR-Cas9, a precise gene-editing tool, have revolutionized this field, enabling more accurate and efficient genetic modifications.

The journey of gene therapy began in the early 1970s with foundational research that paved the way for its clinical application. However, it was not until 1990 that a significant milestone was achieved. This was when the first successful gene therapy procedure was performed on a young girl with severe combined immunodeficiency (SCID). This landmark event demonstrated the potential of gene therapy to cure genetic disorders. Since then, there have been a number of clinical trials conducted, leading to the development of therapies for various other conditions.

Gene therapy has shown huge potential in treating a range of genetic disorders. For instance, in cystic fibrosis, a condition caused by a defective gene, gene therapy aims to introduce a functional copy of the gene into the patient's lungs. Similarly, in muscular dystrophy, gene therapy seeks to restore the missing or defective dystrophin protein in muscle cells.

Cancer treatment has also seen remarkable advances through gene therapy. Techniques like CAR-T cell therapy, which modifies a patient's T cells to target cancer cells, have shown major success in treating certain types of leukemia and lymphoma. There is also ongoing research exploring gene therapy applications in neurological disorders like Parkinson's disease and cardiovascular diseases, expanding its potential reach.

One of the most important advantages of gene therapy is its likelihood to provide targeted and precision medicine. By addressing the underlying genetic cause, gene therapy can offer more effective and personalized treatments compared to traditional methods. This precision lessens the risk of side effects and enhances treatment outcomes.

Additionally, gene therapy holds the promise of curing previously untreatable conditions. For many genetic disorders, traditional treatments only manage symptoms without addressing the root cause. Gene therapy, on the other hand, offers the potential for a permanent cure, improving patients' quality of life and reducing long-term healthcare costs.

Some areas need improvement, and most gene therapies are still in clinical trials. This means that there are technical and scientific challenges that researchers are continually working to overcome. This includes effectively delivering therapeutic genes to the right cells, avoiding immune system reactions, and ensuring the long-term stability of the introduced genes.

Ethical concerns also arise, particularly with germline gene therapy, which can alter the genetic makeup of future generations. The implications of such modifications raise questions about consent, the potential for genetic enhancement, and the possibility of creating societal inequalities. Ensuring equitable access to these advanced therapies and navigating the regulatory landscape for approval and safety are crucial considerations for the future of gene therapy.

Regardless, the future of gene therapy is promising, with ongoing research and development opening new avenues for treatment. Advances in delivery methods, such as nanoparticles and improved viral vectors, aim to enhance the precision and efficiency of gene therapy. Researchers are also exploring the possibility of gene therapy to treat more complex conditions.

As technology evolves, gene therapy is expected to play an increasingly significant role in health care. There are expectations of having personalized medicine, where treatment is tailored to an individual's genetic makeup, offering hope for more effective interventions.

[lifewithaview]

Luke Kleintank in The Man in the High Castle (2015)End of the World

S1E8

Juliana and Frank make plans to escape the Pacific States, only to be dragged back into danger by Joe as he tries to retrieve a new film. Meanwhile, Smith's loyalty is put to the ultimate test when confronted with a startling family discovery.

*Landouzy-Dejerine disease, otherwise known as facioscapulohumeral muscular dystrophy, is a hereditary muscles wasting disease, most commonly affecting the face, shoulders, upper arms and lower legs initially. Symptoms usually appear during teenage years. The genetic cause of the disease is yet to be identified.

[five-thousand-loaves-of-bread]

it’s funny to see how wide the suspected/on the radar “what’s wrong with me” ranges, from multiple sclerosis to schizophrenia/schizoaffective (in dsm iv terms, disorganized/hehephrenia) to muscular dystrophy to other weird forms of already super rare genetic stuff

don’t know if the neurological cognitive things and the physical things are related or separate but just happens to be happening in same person because am just that much of a medical mystery lottery winner

leads me to wonder & search up the weirdest things like “MS vs cognitive symptoms of schizophrenia”

brain feels on fire

need to see so many medical professionals need a interdisciplinary board of geneticist neurologist psychologist rheumatologist PT OT but because of (cogntive$ symptoms so hard to do search because confused enough

[sayeedaqsa]

Best Scoliosis Treatment Hospitals In India

Scoliosis is a spine-related curvature that occurs during the growth of spurt and just before puberty. Scoliosis can take a bad curve due to cerebral palsy

, and muscular dystrophy, the reasons for which are unknown. Most of the cases are mild, with a few known symptoms. The complications become prominent as the children grow. Sometimes there is a requirement for surgery, at other times the brace works like a miracle for the cause.

The treatment of Scoliosis

 is not easy as it is related to the spine which is the most critical bone sequence of the body. The condition of a Scoliosis prone patient ranges from good to fair. It depends upon how early the problem has been diagnosed and treated safely.

Scoliosis can develop into four states or kinds that depend upon an age group and progresses through all, almost the same:

Congenital Scoliosis

Neuromuscular Scoliosis

Adolescence Idiopathic Scoliosis

Adult Denovo Scoliosis

Scoliosis Surgery

The anterior approach allows an additional segment motion which shares the load of the main affected segments of the spine The recovery time is less than 4 weeks

The surgery should stop the spine curve

Scoliosis can affect the Heart and Lungs. Damage occurs when the spine curvature is 70 degrees. A curve of 100 degrees can cause severe damage to the position of the Heart and Lungs.

Surgery can prevent other future trauma of spine pains and arthritis.

Scoliosis Care Management -Post Surgery

The patients can walk after 2 or 3 days after surgery and if they are okay then the patient is discharged after 6 -7 days

The more immobile the spine is kept, the better the spine will fuse after surgery

Bending and lifting are also discouraged

The patient needs to be monitored continuously for 2-3 years with X-rays

Once the bone is fused, it becomes normal

The patients are asked for activity after a thoracic fusion, between the upper and the lower thoracic and lumbar spine.

Female patients can deliver babies after the scoliosis fusion.

Various types of Scoliosis Surgeries are available in India, which is as on the age and the actual medical condition, the spine of the patient

Anterior -Posterior approach

Frontal Approach

Thoracoscopic Surgery

Thoracic Plasty

Osteotomies

Flatback Surgery

Kyphosis Surgery

Partial or Complete Vertebra Remove

Vertebral Column Resection

Indian doctors are well known for their extraordinary achievements in the field of Scoliosis surgeries in the world.

Scoliosis can be treated in a non-surgical method which depends on the curve and progression of the condition. It includes a proper fitness routine, brace, and a few sittings with your doctor to analyze the curvature.

Symptoms of Scoliosis Treatment depend upon the age and the medical condition of the patient. The most common ones are:

Uneven shoulders and blades

Uneven Hips

S or C-shaped spine posture

Unequal distance between arms and the body sphere

Ribs that stick out in one area need treatment

Uneven waist fold since birth but discovered now

We suggest you the 7 Best Scoliosis Treatment Hospitals in India

1. Kedar Ortho Hospital

Kedar Ortho Hospital, Porur Chennai is for Bone, Joint, and Spine treatment and surgery

. The 50-bed hospital has all the modern amenities to remove your Ortho or Scoliosis issues. Kedar Ortho is a dedicated accident and trauma care center. The hospital specializes in Arthroscopy

, Tetraplegics, Paraplegics, Pediatric Orthology, and Oncology

. The hospital owns stare of the art technology for top-class scoliosis and back-related surgery platform.

Address: Kedar Hospital Mugalivakkam Main Road, Porur, Chennai - 600 125

Phone : 044 2252 3407 / 2252 3445

3. Lotus Multispeciality Healthcare, Bangalore

The hospital inpatient care is cost-effective and comfort for patients from international destinations. The hospital specializes in non-communicable diseases and digital clarity for all bone-related and scoliosis issues. The hospital offers specialized solutions for a full spectrum of orthopedic disorders, treatment, surgery, and diagnostics

 including pediatric upper appendage, lower appendage, and spine conditions.

Address: #11/12, Jananakshi Arcade, opposite Sri Jananakshi school, RR Nagar, Bengaluru, Karnataka 560098

Phone: 080 2979 3922

3. Columbia Asia Hospital, Bangalore

The hospital has many branches in India and is well known for patient care and cure success. The hospital offers Shoulder Surgeries

, revision knee and hip replacement surgeries

, disc surgery

, hematoma, and spinal surgeries for a scoliosis recovery plan.

Address 26/4, Brigade Gateway, Beside Metro, Malleswaram West, Bangalore - 560 055

Phone: +91 80 6165 6262

4. Columbia India Hospital, Palam Vihar Delhi

The hospital is for advanced surgery. The hospital offers a full range of Scoliosis treatments through the fusion of joints, osteomyelitis

, congenital hip dysplasia, juvenile metabolic bone disorders, and even more.

Address: Ansal Plaza Near Gol Chakkar, Block F, Palam Vihar, Gurugram, Haryana 122017

Phone: 0124 616 5666

5. W Pratiksha Hospital, Gurgaon

The hospital offers space, bedside ultra-modern monitoring systems, and has a good 25 years of record for treating orthopedic patients.

The flagship hospital of Pratiksha Group, offers keyhole surgery for hip, shoulders adjustment, subacromial decompression, arthroscopic rotator cup repair, sue implants, stem cells rehabilitation, meniscal transplant, and more.

Address: Golf Course Ext Rd, Sushant Lok-II, Shushant Lok 2, Sector 56, Gurugram, Haryana 122011

Phone: 0124 413 1091

6. Hinduja Hospital ,Khar

Hinduja hospital is a multi-specialty hospital in Mumbai with advanced treatment and medical facilities. Automated with 26-bed ICU

Hinduja hospital is the best hospital for spine scoliosis and orthopedic treatment and surgeries. The hospital offers complex joint replacement, and cardiac and keyhole surgeries.

The hospital has an effective non-invasive treatment plan for complex bone and spine problems. The hospital offers backup rehabilitation.

Address: Marvela, 724, 11th Rd, Khar, Khar West, Mumbai, Maharashtra 400052

Phone: 022 6174 6180

7. Apollo Gleneagles Hospital, Kolkata

Apollo offers the best doctors

 and spine treatment consultations from all over the country, equipped with all modern surgical facilities and automation.

Apollo hospitals are the best spine surgery hospital

 in the country. It offers 3rd generation spinal implants in India, musculoskeletal impairments, peripheral nerve disorder treatment, sacroiliac joint dysfunction, scoliosis, metal alloys implant for crippling bones deformity, and more.

Address:156, Famous Cine Labs, Behind Everest Building, Tardeo Mumbai, Maharashtra – 400034

Phone: 022 4332 4500

Best Scoliosis Hospitals In India | HealthTripThe condition of a Scoliosis prone patient ranges from good to fair. It depends upon how early the problem has been diagnosed and treated safely.

[anachronisticmech]

Mechs Disability Headcanons

[plain text: mechs disability head canons]

[a lot of these are taken from conversations with my friend @carmillatism, so please go check mech out!]

-> Drumbot Brian:

[plain text: arrow drumbot brian]

disabilities and disorders: autism, adhd, ocd, pots, cfs, fibro, hEDS, short sightedness, tinnitus, gad, ocpd, ppd, stpd, bpd, dpd, dpdr

aids: service animal (teddy), cane, rollator, crutches, compression socks, stim toys/chewellery, anti-depressants, port

extra: fluent in BSL, faints very frequently, is very easy going on his body (probably the most out of all the mechs), takes care of others when they’re going through flare ups or meltdowns or other, both because he knows what to do more than others and because he likes taking care of people, does need help from others sometimes and has some anxiety surrounding that

-> Jonny d'Ville:

[plain text: arrow jonny d’ville]

disabilities and disorders: autism, adhd, ptsd, otosclerosis, scoliosis, arrhythmia, scad, costochondritis, fibro, nut allergies, npd, bpd, amputee, dermatillomania, pots, hpd, aspd, stpd, ppd, dpd

aids: service animal (beelzebub), cane, crutches, wheelchair, compression socks, stim toys/chewellery, epipen, hearing aid, g tube, AAC device, prosthetic left leg (from knee)

extra: stims with his guns safety a lot, is a carnivore and gets very sick/has flare ups when eating something that is not meat (can eat raw meat) but needs other nutrients through his g tube, can fingerspell in BSL

-> Ashes o'Reilly:

[plain text: arrow ashes o’reilly]

disabilities and disorders: autism, adhd, asthma, costochondritis, cfs, fibro, dpdr, bpd, npd, hpd

aids: service animal (cerberus), crutches, wheelchair, nasal cannula, inhaler

extra: has a lot of asthma attacks due to smoking but doesn't stop, service animal is cerberus from udad, fluent in BSL

-> Gunpowder Tim:

[plain text: arrow gunpowder tim]

disabilities and disorders: autism, adhd, psychosis, monochromacy colourblindness, retinitis pigmentosa, cfs, fibro, bpd, hpd, npd, ppd

aids: guide/service animal (gunner), white cane, stim toys, anti-psychotics, communication/pec cards

extra: usually has a hard time being the gunner but loves just shooting at things, even if he cant completely see what hes aiming for, the aurora has braille everywhere for her to read when her eyes are particularly bad, fluent in BSL for good days when other mechs need to communicate with BSL

-> Raphaella la Cognizi:

[plain text: arrow raphaella la cognizi]

disabilities and disorders: autism, ocd, lupus, cfs, crohns, fibro, hEDS, bpd, npd, hpd, ocd, stpd

aids: service animal (carbon monoxide), g tube, cane, wheelchair, picc line, port, stim toys

extra: she gets very upset at not being able to do science on days where she can't do anything but will list her symptoms and experience to turn it into a small experiment, stims by pouring liquid between vials, spin is science (shes so carlos for that), fluent in BSL

-> Marius von Raum:

[plain text: arrow Marius von raum]

disabilities and disorders: autism, adhd, cfs, hEDS, muscular dystrophy, otosclerosis, pots, bpd, stpd

aids: service animal (gizmo), electric wheelchair, crutches, port, stim toys, hearing aid, compression socks, AAC device

extra: fluent in BSL, is the most likely to cause flare ups by overworking his body (hes just silly okay)

-> Ivy Alexandria:

[plain text: arrow Ivy Alexandria]

disabilities and disorders: autism, ocd, neuropathic pots, otosclerosis, cfs, fibro, epilepsy, tourettes, ocpd, ppd, bpd, spd

aids: service animal (daisy), cane, rollator, crutches, hearing aids, stim toys/chewellery, communication/pec cards, AAC device

extra: fluent in BSL, spin is books and languages, is nonverbal more often than not

-> Nastya Rasptina:

[plain text: arrow Nastya Rasputina]

disabilities and disorders: autism, hypovolemic pots, vEDS, hEDS, chronic venous insufficiency, raynauds syndrome, vasculitis, bpd, avpd, ppd, spd

aids: electric wheelchair, rollator, cane, ng tube, port, compression socks

extra: just stays up in the vents and talks with aurora on really bad days, body cant take solids most of the time, fluent in BSL, RSL and DGS

-> The Toy Soldier:

[plain text: arrow the toy soldier]

extra: is not real, so does not have any disabilities, but does use a cane to help stay upright, also is fluent in BSL, also uses communication/pec cards

[crippleprophet]

if it's ok to send an ask addressing another, mg anon i'm literally in a similar boat as you except i may have muscular dystrophy and i've been having symptoms my whole life, i just started having more serious chest weakness like last month, and i'm actually going to the er for it too soon

idk if it helps to know that you're not alone but

i really hope they're good to you. you deserve to be taken seriously and respected, cared about and cared for

response to this ask (link)

absolutely okay to send an ask in response to another! this is so kind of you & i hope the previous anon sees it - and that you, too, receive respect and quality care 🖤

[cleverthylacine]

I am probably cranky and I will probably continue to be for a while.

If so, I am apologising in advance for it.

My family is very fractured and it doesn’t help that my father died in 2009 and my wonderful stepmother and the horrible woman who was my father's first wife and my alleged adoptive mother both have significant memory loss, plus the horrible one is drunk all the time.

My brother and I have recently become rather close although we used to have a fraught relationship.  He lives in Indiana.  I live in California.

He is on disability and broke as fuck. His son is also disabled.  I have been trying to help him out when I can.   (That is why I won’t be going to TFCon in March, and my brother is more important than TFCon, I’m just saying, all my plans were already in the air as it was before last week. Our mother has money but has not been helping him because her evil wife* won't let her.)

Please note: my mother is actually a raging homophobe and she is not boning *KC; I just call KC her wife because KC acts as though they're in a horridly dysfunctional codependent QP, though my mother does not actually acknowledge that such things exist; my mother can't comprehend the fact that I date people of more than one gender.

Last week he started coughing up blood and also crapping blood, he told me he’s lost 40 pounds and his son took him to the hospital.  I am sure you know what I’m about to say next, but we don’t know what kind.  They were talking about NSCLC, but the symptoms he was having sound more like colorectal cancer with lung mets to me. Anyhow, he was supposed to have surgery today and his doctor was supposed to talk to me and him together via Zoom after the surgery.

I got up at 9 AM and got fully dressed and have been waiting all day and haven’t got a call, a text or anything from my brother, his son or the hospital.

I don’t know what hospital he is at.  My nephew hasn’t returned my text but he’s probably at the hospital and has shite reception.

I work in a hospital myself and have done so for most of my life; I know that it’s a Federal holiday, he was almost certainly an add-on case because of his urgency, and that it’s not uncommon for there to be delays on holiday weekends because that’s when all the chucklefucks go out and get drunk and drive around in their cars, shoot each other and hit things.

So I know this could all be just ... Murphy’s law in action.

But at the same time I’m terrified that he has died on the operating table and that’s why nobody’s called me or called/texted me back.

So there’s that. I would just like the one relative I can have regular conversations with to not die for a while and also not be in horrible pain. And to get to know my nephew better, whom I have never met because he has severe muscular dystrophy and my brother and I had our reconciliation in the middle of the pandemic so nobody’s been flying nowhere no how.

Just why is my family the most ever.

Lord I never did think that either my brother or I would make it this far but in the 80s we all expected the world would blow up any minute all the time and then all the people I was friends with thought we were gonna get AIDS. Some of them did.

At least he's eating because my nephew has made sure he's got weed gummies now that he can't smoke. He's already on chemo.