#rare conditions

[atarahderek]

Quasimodo has Treacher Collins syndrome.

It is unrelated to his kyphoscoliosis, which has many possible causes and may not be congenital. TCS does not affect the skull surrounding the brain, and thus TCS patients generally have normal intelligence and neurodevelopment.

#Also I'm back on my HoND fixation #in case that wasn't clear #Treacher Collins syndrome #awareness #the Hunchback of Notre Dame #HoND #Quasimodo #rare conditions #his nose is depicted a bit incorrectly however #Notre Dame de Paris

[tailsfromthecrypt]

#eosinophil #eosinophilic gastritis #stomach disease #rare conditions

[tuptastic]

Hey friends.

Recently received my official diagnosis. It's not PoTS. It's worse.

I have a rare, chronic heart arrhythmia known as Innapropriate Sinus Tachycardia. While it's frequently seen in women in their 30s, I've een diagnosed at 19. I'm likely not going to get better, and in fact, I'll likely continue to get worse.

I'm heartbroken. I'm sad. I can't get my service dog for another five months to even begin training as my body falls apart around me.

The only thing keeping me going right now is, honestly, Star Wars and this fandom.

So, thank you? I guess? For giving me the push I need and the want to actually keep getting up in the mornings?

I appreciate it.

Probably gonna name my service dog tup or padme. It makes me giggle when I think of it.

#personal vent #vent post #disability #innapropriate sinus tachycardia #IST #rare conditions #disabled pov #actually disabled #star wars the clone wars #personal post #do not reblog

[daisywords]

One of my biggest nitpicks in fiction concerns the feeding of babies. Mothers dying during/shortly after childbirth or the baby being separated form the mother shortly after birth is pretty common in fiction. It is/was also common enough in real life, which is why I think a lot of writers/readers don't think too hard about this. however. Historically, the only reason the vast majority of babies survived being separated from their mother was because there was at least one other woman around to breastfeed them. Before modern formula, yes, people did use other substitutes, but they were rarely, if ever, nutritionally sufficient.

Newborns can't eat adult food. They can't really survive on animal milk. If your story takes place in a world before/without formula, a baby separated from its mother is going to either be nursed by someone else, or starve.

It doesn't have to be a huge plot point, but idk at least don't explicitly describe the situation as excluding the possibility of a wetnurse. "The father or the great grandmother or the neighbor man or the older sibling took and raised the baby completely alone in a cave for a year." Nope. That baby is dead I'm sorry. "The baby was kidnapped shortly after birth by a wizard and hidden away in a secret tower" um quick question was the wizard lactating? "The mother refused to see or touch her child after birth so the baby was left to the care of the ailing grandfather" the grandfather who made the necessary arrangements with women in the neighborhood, right? right? OR THAT GREAT OFFENDER "A newborn baby was left on the doorstep and they brought it in and took care of it no issues" What Are You Going to Feed That Baby. Hello?

Like. It's not impossible, but arrangements are going to have to be made. There are some logistics.

#idk what to tag this #worldbuilding #writing fiction #historical fiction #fantasy #a real-life example: my dad (a pediatrician) was once entrusted with the care of a baby who was born with a rare condition #this was in a place without great hospital/medical access and anyway they were going to fly the baby over #and he specifically asked them to bring the mother and baby #they show up with baby and...the baby's uncle #and he was like. y'all. do you think I asked for the mom to come just for fun??? We don't have formula here. what is the baby going to eat?

[loreandtempo]

Straight Outta Neutrophils

Back in July, when I was dealing with a sick 9 month baby, I had never heard of neutrophils.  Three months on, my learner plates have come off, so to speak, as I’ve learned a whole lot more about them. I’m currently coming to terms with the fact that, Kaydence has got a rare blood disorder called Severe Chronic Neutropenia (SCN). Which is also a rare type of primary immunodeficiency. And what I…

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#Health #Laryngospasm #Mastoiditis #Motherhood #Neutropenia #Neutrophils #Rare Conditions #SCN

[inkskinned]

the thing about art is that it was always supposed to be about us, about the human-ness of us, the impossible and beautiful reality that we (for centuries) have stood still, transfixed by music. that we can close our eyes and cry about the same book passage; the events of which aren't real and never happened. theatre in shakespeare's time was as real as it is now; we all laugh at the same cue (pursued by bear), separated hundreds of years apart.

three years ago my housemates were jamming outdoors, just messing around with their instruments, mostly just making noise. our neighbors - shy, cautious, a little sheepish - sat down and started playing. i don't really know how it happened; i was somehow in charge of dancing, barefoot and laughing - but i looked up, and our yard was full of people. kids stacked on the shoulders of parents. old couples holding hands. someone had brought sidewalk chalk; our front walk became a riot of color. someone ran in with a flute and played the most astounding solo i've ever heard in my life, upright and wiggling, skipping as she did so. she only paused because the violin player was kicking his heels up and she was laughing too hard to continue.

two weeks ago my friend and i met in the basement of her apartment complex so she could work out a piece of choreography. we have a language barrier - i'm not as good at ASL as i'd like to be (i'm still learning!) so we communicate mostly through the notes app and this strange secret language of dancers - we have the same movement vocabulary. the two of us cracking jokes at each other, giggling. there were kids in the basement too, who had been playing soccer until we took up the far corner of the room. one by one they made their slow way over like feral cats - they laid down, belly-flat against the floor, just watching. my friend and i were not in tutus - we were in slouchy shirts and leggings and socks. nothing fancy. but when i asked the kids would you like to dance too? they were immediately on their feet and spinning. i love when people dance with abandon, the wild and leggy fervor of childhood. i think it is gorgeous.

their adults showed up eventually, and a few of them said hey, let's not bother the nice ladies. but they weren't bothering us, they were just having fun - so. a few of the adults started dancing awkwardly along, and then most of the adults. someone brought down a better sound system. someone opened a watermelon and started handing out slices. it was 8 PM on a tuesday and nothing about that day was particularly special; we might as well party.

one time i hosted a free "paint along party" and about 20 adults worked quietly while i taught them how to paint nessie. one time i taught community dance classes and so many people showed up we had to move the whole thing outside. we used chairs and coatracks to balance. one time i showed up to a random band playing in a random location, and the whole thing got packed so quickly we had to open every door and window in the place.

i don't think i can tell you how much people want to be making art and engaging with art. they want to, desperately. so many people would be stunning artists, but they are lied to and told from a very young age that art only matters if it is planned, purposeful, beautiful. that if you have an idea, you need to be able to express it perfectly. this is not true. you don't get only 1 chance to communicate. you can spend a lifetime trying to display exactly 1 thing you can never quite language. you can just express the "!!??!!!"-ing-ness of being alive; that is something none of us really have a full grasp on creating. and even when we can't make what we want - god, it feels fucking good to try. and even just enjoying other artists - art inherently rewards the act of participating.

i wasn't raised wealthy. whenever i make a post about art, someone inevitably says something along the lines of well some of us aren't that lucky. i am not lucky; i am dedicated. i have a chronic condition, my hands are constantly in pain. i am not neurotypical, nor was i raised safe. i worked 5-7 jobs while some of these memories happened. i chose art because it mattered to me more than anything on this fucking planet - i would work 80 hours a week just so i could afford to write in 3 of them.

and i am still telling you - if you are called to make art, you are called to the part of you that is human. you do not have to be good at it. you do not have to have enormous amounts of privilege. you can just... give yourself permission. you can just say i'm going to make something now and then - go out and make it. raquel it won't be good though that is okay, i don't make good things every time either. besides. who decides what good even is?

you weren't called to make something because you wanted it to be good, you were called to make something because it is a basic instinct. you were taught to judge its worth and over-value perfection. you are doing something impossible. a god's ability: from nothing springs creation.

a few months ago i found a piece of sidewalk chalk and started drawing. within an hour i had somehow collected a small classroom of young children. their adults often brought their own chalk. i looked up and about fifteen families had joined me from around the block. we drew scrangly unicorns and messed up flowers and one girl asked me to draw charizard. i am not good at drawing. i basically drew an orb with wings. you would have thought i drew her the mona lisa. she dragged her mother over and pointed and said look! look what she drew for me and, in the moment, i admit i flinched (sorry, i don't -). but the mother just grinned at me. he's beautiful. and then she sat down and started drawing.

someone took a picture of it. it was in the local newspaper. the summary underneath said joyful and spontaneous artwork from local artists springs up in public gallery. in the picture, a little girl covered in chalk dust has her head thrown back, delighted. laughing.

#writeblr #warm up #this is longer than i wanted i really considered removing that part about myself and what i went thru #but i think it really fucking bothers me that EVERY time i talk about being an artist #ppl assume i just like. had the skill and ability to drop everything and pay for grad school. #like sir i grew up poor. my house wasn't a safe space. i gave up a FREE RIDE TO LAW SCHOOL. for THIS. bc i chose it. #was it fucking hard? was i choosing the hard thing?? yes. #but we need to stop seeing artists as lazy layabouts that can ''afford'' to just ''sit around and create'' #when MANY - if not MOST - of us are NOT like that. we have to work our fucking ASSES off. hard work. long and hard work #part of valuing artists is recognizing the amount we sacrifice to make our art. bc it doesn't just #like HAPPEN to us. also btw it rarely has anything to do with true talent. #speaking as someone with a chronic condition i hate when ppl are like u have it easy. like actively as i'm writing this my hands r #ACTIVELY hurting me. i haven't been posting bc my left hand was curled in a claw for the last week #this isn't fucking luck. after a certain point it's not even TALENT. it's dedication & sacrifice. #''u get to flounce around and do nothing with ur life'' is a narrative that is a direct result of capitalism #imagine if we said that about literally any other profession. #''oh so u give up 10 yrs of ur life to be a doctor? u sacrifice having a social life and u get SUPER in debt? #u need to work countless hours and it will often be thankless? well i wish i was that lucky'' #we should be applying that logic to landlords ONLY #''oh ur mom and dad gave u the money to buy a house? and all u did was paint it white and rent it? huh.''

[prose2passion]

fascinating for so many reasons

#science #alice in wonderland #rare conditions #epilepsy

[chenardy]

#rare conditions #secular heterochromia #eyes #multi colored

[makethewordsyours]

i cant believe that to be a translator i just have to come to terms with the fact that translation does not exist. there will never be complete identity between two different languages there can only ever be equivalence. there is no such thing as translation without loss & in fact loss is inherent to translation you cannot escape it. and as a translator you will always have to make choices that will lead to those losses and it will feel like a betrayal and you will be haunted by what you have killed in translation & grieve and there is nothing you can do about it. the only way to curb that loss is if everyone everywhere spoke every language which is not feasible & there is just a void of meaning, a cemetery of significance in every translation and a world of footnotes and translator’s notes will not be enough to fill in the gaps. but still. yknow yknow

#on translation #translation #something something the human condition etc etc #that too. i am thinking thoughts #rarely post on here but hii btw i am a translation major #here’s my two cents

[elftwink]

to preface this post i am anti-advertising i think we should explode the entire industry but it's sooo funny when you people make posts like "and they don't even work!!" like. sorry to be the bearer of bad news but yes they do. that's why we have to put up with so many despite everyone hating them and thinking its annoying. because they actually work really well and make a shit load of money

#it actually would be way better if they didnt work and made no money bc businesses would abandon them #this isnt like stocks where everythings abstract and is essentially gambling (i dont understand stocks) #like ppl in the ad industry create things. that make a tangible and quantifiable impact on the business #which is then used in further ad planning. it is NOT all smoke and mirrors #like its fake in that the industry is not providing a necessary service the way like. grocery stores are #but its not the level of fake where everything is abstract like theres deliverables #moreover there is an extensive body of academic work specifically on how to make ads more effective #ALSO i think some of u views ads like. as if they have a win condition. which is you buy product #but in current advertising this is pretty rare and comparatively ineffective #which is why you see MANY ads which dont seem to be selling anything in particular. or which have nothing all to do with the product #the 'win' condition for THAT kind of ad is something more like 'viewers remember our name' #like. ex i would say ads for temu have not been effective on me bc i havent bought anything from them #but temu probably thinks they were SUPER effective on me because i talked abt them like 5 different times at work #and i do in fact know exactly what the company does and what they sell #and they were able to capitalize on the reputations of existing companies (wish shein etc) to build their own brand #good idea generator

[poorly-drawn-mdzs]

Obsessed with how pathetic you make Jim Guangyao look. The hat. I love it.

Don't let the smile and sweet words fool you, Jim Guangyao has lost everything in the divorce, and continues to lose.

#poorly drawn mdzs #mdzs #jin guangyao #mdzs au #modern au #this takes place in the same universe as Alan Zhan btw #I have been waiting for the day I got to meet him....Jim Guangyao..... #I think he won at least one divorce. But also did so under suspicious conditions. #you can 'win' divorce is your ex is dead right? #I like to think he wasn't even in the will and all the money and property went to another relative. #Who did he divorce? That's up to reader interpretation #Jim Guangyao is the busy dad who's never around except on the very rare occasional holiday. He cannot relate to his children #Nobody has ever seen him without his hat. In highschool it was a trilby. He's got baseball cap on in this drawing (I tried). #for casual friday. #He would burn everything at the grill. Half-bad luck and half distracted by work calls #Jim has nothing and no one. Despite this he always seems to land another hot spouse within a few months. #(Its his dimples. They are mesmerizing. You will look at them and sign this will without second thought <3)

[zootzar]

"..this is what you wanted to show me?"

"Superior to your filthy earthan oceans, isn't it?"

"..shut up zim."

#zadr #zadf #iz zadr #invader zim #iz #zim #invader zim dib #dib membrane #irk #irken empire #irken architecture #i feel like irk doesnt have very many natural beaches left #but there are a few rare ones #and because of the irken allergies they are the clearest water you'll ever fucking see #no pollutants #no micro plastics #Irken laws make SURE their water is clear #they dump all their trash on waste planets anyway #irkens are such a prideful species you think they wouldnt make sure their planet is in absolute PERFECT condition? #all the more reason why what zim did during impending doom one was such a horrible offense #anyways i spent seventeen hours on this over the course of several days and my hands hate me #please enjoy it <3 #p l e a s e. #my art

[alpacacare-archive]

its DESTINY

#repostober #day 18 actually on time! wow #undertale #papyrus #danganronpa #dr1 #kiyotaka ishimaru #yes. mashing favorite things together again #but it was meant to be #so many similarities between these two goofs #loud eccentric passionate autistic supportive of their friends always wearing the same outfit EASILY the best character in their franchise #HARDWORKING TO THE POINT OF WORKAHOLISM!!!!!!! UPLIFTING OTHERS WITHOUT ERASING OR DIMINISHING THEIR OWN GREATNESS!!!!!! #always eats the same thing (taka - rice balls toast and a banana- papyrus - DINOSAUR EGG OATMEAL NOT SPAGHETTI sorry its a pet peeve) #kindhearted and so aggressive about it genuinely believe that anyone can improve themselves and theyre both so silly and quirky all the tim #literally the only differences that i can think of are that taka would throw himself overboard if someone authoritative told him to #before they could even finish their sentence while papyrus is an anarchist arsonist who cusses and his intended jokes are actually funny #' * SIGH * ... WHAT A TROUBLED YOUNG HUMAN ... 'FUCK' ISN'T EVEN IN HIS RARE VOCABULARY ! HOW DOES HE FUNCTION UNDER THESE CONDITIONS ?? #he would take taka under his wing and get him back on the straight and narrow (give him weed) #and i feel like after the three day long yell over how a skeleton is walking and talking as if that were normal he'd really look up to him #fav things about this are the way takas shirt hangs off of papyrus' rib cage cus theres nothing there but a spine #that was so fun to draw sdfhg #taka cosplaying papyrus is my gift to humanity today

[wynandcore]

Sharing this here too because this is hilarious to me. Tron I understand the message but what the fuck??

#I understand why this wasn’t in the show because well. Beck’s rarely really *relied* on Tron due to Tron’s condition #at least in season 1 ofc #tron #i ramble

[braincloggedwithcats]

Hey . Kissing repulsion is always ok. If you're kissing repulsed you're awesome and I care you. It doesn't make you silly, it doesn't make you childish and you deserve respect. It doesn't matter why you're kissing repulsed, if you have a reason at all, how old you are or how much or little you can tolerate, you're not hurting anyone and it's ok. I'm sorry if you've been made to feel bad for it, I'm sorry if you've ever made yourself feel bad for it, I'm sorry it's so hard to avoid. You're cool and you're allowed to feel however you want about it and that should be respected. You're ok

#sorry this is maybe a little out of nowhere and unusual for me but i was Thinking #kissing repulsion #kissing repulsed #aromantic #aromantism #asexual #asexuality #is kissing repulsion common in asensual people too? im not sure but it seems like it would be #i wont tag because i dont wwnt to invade but if anyone knows please tell and if youre asensual HI !!! #kissing repulsion is very rarely talked about and rarely respected. and when it is respected it feels very conditional #also i mostly tagged this aspec stuff but kissing repulsed allos are valid too. if youre kissing repulsed i dont care why youre welcome her #aspec #aspectrum #ram's post #kiss repulsed #kiss-repulsed

[fleshdyke]

does anyone else find it a little bit weird when omegaverse ppl are like “omegas are intersex” or have “intersex genitalia” or whatever like… stop that. please

#like thats SO WEIRD. please leave us alone #write ur a/b/o idc. dont fetishize us though lmao. and dont lump all of us into one very specific and very rare condition #like thats so so so disrespectful to intersex ppl who were born w both external sex characteristics bc the medical abuse almost every single #one of these ppl faced is ASTOUNDING. like jesus #i know its literally omegaverse and there are bigger intersex issues out there but it’s just another instance of fandom being fucking weird #rambles #intersexism