#what is hemophilia

[a-midnight-dreary]

The egg is rotten now.

The paint and gold leaf have chipped

And flaked away

From a hundred hours of being held.

The shell

Remains

Uncracked.

I keep the egg wrapped in a sheet

Tucked in a discreet shoebox

Up, on a high shelf

In a crowded closet.

The mystery

Still

Haunts me.

I tell myself again and agian

"There was nothing to save,

There was nothing to lose.

Only yellow yolk floats inside."

Only

Yellow

Yolk.

But I can still remeber

how It sometimes shook and jumped,

Warming at my touch.

Brushing my fingertips over the shell now

The egg is just as still

And cold

As marble.

Last year i wrote a poem for @quezify 's eggtober event, and ive decided that it warrants a sequel now. This is a very personal piece, as was the previous poem. Using abstract imagry and symbols to process my emotions feels much less confrontational, and allows me some distance to analyze how my experiences have shaped me. i hope this poem resonates with someone. happy eggtober! 💛🍳

[crystallllines]

the most interesting thing about the last romanovs— imo, aside from the brilliant idea of sewing jewels into your corsets and accidentally creating, like, bullet-proof vests— is aleksey’s hemophilia.

yeah like i love anastasia the musical and anastasia the cartoon and i liked that anastasia’s royal diary (note: most interesting part of THAT read was when she was writing about switching from the Julian to the Gregorian calendar & 10yo me was like “!!! 😲😲😲 people have different ways of telling time?!” as if one wasn’t already hard enough!!), but if i’m reading about the romanovs it’s either to get a better idea of the context of the era, courtly life, or it’s because i wanna read about that bleeding disease.

[littl3d0ll-art]

YOUR NARINDER IS SO CUTE I LOVE THE HOMOPHOBIA IN HIS EYES 🤍

BDHSBHAVAHDVHRHAHAHSBDUABSH THANK YOU!!!!!

[ibijau]

I put doll!Valcamon in a cool modern hoodie and now I'm trying to figure out what a modern AU would be like for the Magpie King and him.

option 1: same story, modern setting. Valcamon works in a computer safety firm that he technically started but which he no longer owns. He hasn't been fired only because there are critical stuff only he knows how to do, and everyone he tried to explain just can't grasp it. The Magpie King is his internet boyfriend, who also happens to work for the same company except in a different sector. They haven't met at work and Valcamon is hesitant to meet people irl because they sometimes react weirdly to his face. The Magpie King gets impersonated in a plot to force Valcamon out of the company, and resents Val when Val fails to realise the other person is a fake.

option 2: continuation of their story, but in a modern setting. tbh this is maybe the least interesting option, but also the most chill. Two messed up gods in love, trying to figure out how to make a reservation on airbnb

option 3: different story, modern setting. It would take the most work, but it'd make the most sense (Medka and Actalus have a modern AU and it has almost nothing to do with their canon version).

[thebirdandhersong]

personally I don't like this ish (pointing to my emotions) and if I could remove one very specific one I am struggling with at the moment, that would be SOOOOOO very convenient and helpful, Lord

[quirinah]

doing this really cool thing in darkest dungeon lately called forgetting to check any of my character's stats before embarking

[deadmegumi]

NEW TAV JUST DROPPED her name's ashra don't let her 16 con and 6'2 towering-over-everyone-but-karlach fool you she's a hemophiliac with brittle bone bitch disorder. Currently in love triangle w shadowheart and lae. Gale is trying to smash even tho she keeps bullying him for being a wizardcel who can't effortlessly use magic like her (chad draconic bloodline sorcerer)

[sassyandclassy94]

I really would love to write a fic about Albert Ingalls, but alas! I have literally no plot ideas😔

However, I am open to suggestions💁🏻‍♀️

[theprofpenguin]

Me, at a camp: uhhh, I have hemophilia

My counselor: this is a hemophilia camp, we know

[sillimancer]

reading Burnout by Emily Nagoski and I'm not very far yet but the first chapter put words to something I've been kind of intuitively realizing lately about needing to deal with the immediate consequences of trauma and stress to be better-equipped to deal with the cause at its root and it's

well it's actually annoying as hell if I'm honest

[stil-lindigo]

Ahmed Saad or @/90-ghost's brother in law is currently doing his best to organise the evacuation of his family from Gaza. This family suffers from a combination of ailments that all require medical attention. This is the description on their GFM page:

Hello, I hope you all are doing well!

My name is Mohamed Monir Ahmad Mahmoud, I’m a hemophilia patient from Gaza. I decided to start this campaign with all the hope that you could support me in evacuating Gaza to do surgery for me and my daughter and start a fresh life with my 5 kids out of the ongoing genocide in Gaza [...] I was supposed to go out at the end of 2023 to have surgery on my knees but since 7 October, I had no chance due to the procedures on Rafah crossing, the gate of Gazans to the world. Now, my knees and elbows are bleeding with no access to any type of care and if things stand as they are in Gaza, I won’t be able to walk or make any effort because of the bleeding (currently I am barely able to set up a small fire in front of the tent to prepare food for my kids).

What I ask is 60,000, for travel costs because each one would need to pay 5,000-8,000$ to be allowed to leave Gaza through Rafah crossing and we need around 3000$ more in Egypt for our stay and to obtain visas. We will be heading to Brazil where my brother Diaa lives and there is a huge chance to do the surgeries and access health care as the health care for Hemophilia patients in Brazil is one of the most advanced in the world.

please give generously!!

[drsheetusingh-blog]

World Hemophilia Day – 17 April 2023

World Hemophilia Day is celebrated on 17th April every year, seeking to improve awareness of hemophilia and other inherited bleeding disorders. The day is celebrated in honor of Frank Schnabel, founder of the World Federation of Haemophilia (WFH).

[remilovesabed]

not sure what u did but they’re happy now

they are staring at you

[ibijau]

anyone knows of fiction story where a character has hemophilia? I’m trying to like. See what’s out there to avoid bad clichés in writing Medka, but so far I’m... not really finding much...

[vonbabbitt]

big long kamimura loredrop that i sent to my tetro staff two years ago. obvious spoilers and trigger warning for a lot of stuff. not for the weak of heart. also forgive the very casual tone this is written in i was sending it to my STAFF!! MY FRIENDS!! it has not been curated for public release lol

KAMIMURA KAZUTOSHI. WOW. LOTS TO UNPACK HERE. so kamimura was born as a very sickly kid. his parents were initially planning to have two kids, but when kamimura was born with very particular needs, they decided it would be better to dedicate their full time and attention to just one kid. so thats what they did! kamimura was born with a few conditions that made his childhood a bit rougher, the main of which being hemophilia, an (at the time) unidentified autoimmune disease and a few lesions on his brain. not ideal! so he was in and out of the hospital a lot as a kid, something that was very scary for him at the time, but his parents were very very supportive and loving during this time. they would be at the hospital with him every single time he had to be there (obvs cuz he was a tiny baby boy) and his mom would not go home until he was discharged. she would always be there telling him stories and playing games with him and doing her best to make the experience as comfortable as possible for him. so that made it less scary!

kamimura had a very good support system and it made him a very happy and social kid! he grew up very outgoing and playful and eager and close with his family. his dad was a busy guy who worked in tech, so while he was usually at work, his mom worked from home as a copy editor, so he spent a lot of time with her. as he started to get a little older (7-8), a few more comorbidities and diagnoses started popping up - chronic fatigue, crohns, some vision problems, muscle issues, things that made his life a lot more difficult and worried his parents because he was getting bad fast. this meant a lot more time in the hospital for baby kamimura which is very unfortunate for him. eventually he gets put on a new balance of medications/treatments and his family keeps doing their best because goddamnit their kid should get to be a happy kid! which he is! hes a very happy kid! hes just also a kid with a LOT of medical issues

SO THEN WE HIT AGE NINE. kamimuras mother is home alone with him when a close family friend drops by. hes someone kamimura knows very well - comes to all their parties, visits often, etc etc. but he was also someone who had very strong feelings towards kamimuras mom. he had confessed to her multiple times and obviously she had said no because she is married with a child and was not interested at all. except this time hes completely fed up with it. she says no, he gets aggressive and violent and tries to overpower her. she fights back, he panics and stabs her. a lot. repeatedly. over and over and over. so the kitchen is an absolute bloodbath. not good! a few minutes into this, kamimuras dad gets home from work and is very quickly added to the body count. family friend runs, and about ten minutes later, kamimura gets home from school.

so now this nine year old boy has walked in on his parents mutilated bodies lying in a sea of blood on the kitchen floor. his mind basically shuts down. he cannot even begin to process the ways in which his entire world has just come crumbling down. he goes upstairs to his room, closes the door, and proceeds to stay there for two days straight. if he can just stay in his room and not go outside, no matter what he saw, no matter what he smells, he can pretend that everything is fine and theres nothing downstairs.

after two days of this, kamimura's dad's work calls for a wellness check. a wellness check is performed! EVERYTHING IS NOT WELL. the police find kamimura, remove him from the house and into the system he goes. pretty soon he ends up living with his moms sister, who isnt a mean person or anything, but she never wanted kids and shes just lost her sister and shes going through a lot so she never really connects with kamimura. she feeds him and houses him and does her best, but hes completely shut off emotionally and very traumatized and wants nothing to do with this new life thats been put on him so he mostly ignores her and just goes through the beats of life.

from this point on, he has no friends. he doesnt get close to anyone. he doesnt try to. he shuts himself off, keeps to himself and gets picked on a bit because of it. hes outcast at school pretty quickly and that does not do much to help his mental health. it doesnt help that his PHYSICAL health is still deteriorating pretty fast and hes now living with somebody that has NO experience in taking care of his medical needs. hes still in the hospital all the time, but now hes alone and its quiet and hes scared. he hates hospitals. he hates going to the hospital so so so so much because hospitals are scary and it only serves to drive home the complete lack of his mom existing that is haunting him every day. it doesnt help that hiding out in a corpse house for two days has given him a deep, DEEP fear of anything dirty or putrid in the way that his parents' crime scene was. this evolves into a pretty bad case of germophobia that makes him hate hospitals even more because theyre disgusting infected places where people go to die and rot. bad.

but life continues! so when he turns 14, kamimura goes to high school for the first time! its also around this time that he finally dyes his hair - his black hair makes him look exactly like his mom and he cant handle seeing that every time he looks in the mirror, so blue it is! because blue does not look like either of his parents and now he doesnt have to fking see their faces every single time he looks at himself. yay! so he enters high school, his mental health is tanking, his physical health is tanking and everything is bad. high school is equally bad because hes still getting bullied and he feels sick all the time and school is stressful and he is completely lacking in socialization. so at age 14, kamimura tries to kill himself for the first time. it does not work. he goes to the hospital and very hastily explains it to his aunt as having simply fucked up his own medication and says it was all an accident because fuuuuck he does NOT want to be institutionalized. that would suck. and luckily this excuse works and he's back out in the world soon after. yay?

anyway life goes on! so kamimura goes back to school. except weirdly enough, he actually starts talking to another person. this person is named isao kamei and he is a boy in kamimuras grade! hes nice and cool and hangs out with kamimura and likes kamimuras dumb blue hair and likes all the things kamimura likes (scary movies. breaking random shit behind the school after class. yknow) so the two hit it off pretty quickly and soon kamimura has a best friend. except, uh oh, maybe hes more than a best friend?? kamimura starts realizing that hes got feelings for isao and panics because he does not need this complication ruining his one and only friendship. kamimura has had severe severe trust issues for years now and has finally let himself get close to another person again and he CANNOT LOSE THAT. but isao is a good guy, and theyre close, and kamimura is starting to think that isao feels the same way about him so maybe hed be cool about it. it goes against every instinct he has spent the past five years cultivating, but he finally works up the nerve and admits to isao how he feels about him.

IT GOES BADLY. SO BADLY. isao is uncomfortable and frankly kind of disgusted and pulls back HARD. he basically distances himself from kamimura forever and word very very quickly spreads (starting from isao) that kamimura is gay and that he asked out isao, something that absolutely quadruples the amount of bullying he is receiving. so a few days later, kamimura tries to kill himself for the second time. once again it does not go well. he gets very very very sick, but still wakes up in the end and is absolutely miserable and furious about it. his awful awful awful life continues to march on as always and hes back at school pretty soon after that! he continues getting relentlessly bullied, his health continues to deteriorate, and finally during one of his numerous numerous hospital visits he gets hit with two fun new terms: multiple sclerosis and myasthenia gravis. these are the two things that produce the vast majority of his symptoms. so at the very least he now has a few words to label himself with, but hes not really that thrilled about it either way. kamimura is someone with a lot of internalized ableism and resentment towards his own body. he sees it as the reason his life sucks and the reason he gets bullied and the reason he cant live like other people can. he hates himself, and that makes him hate himself even more because his parents always made such a big deal about telling him how much they loved him and how much he should love himself, so he feels like hes betraying them by absolutely loathing himself and his body.

so at sixteen, he tells his aunt he wants to move out. they arent close and he just wants to be on his own and honestly shes on board with this because she never wanted kids and shes ready to go back to her life. so out the door he goes! hes got his own apartment now, which means theres nobody to make him get out of bed or shower or eat or go to school. so he stops doing all of those things, which makes his health deteriorate faster and makes him even more miserable. so at age sixteen, kamimura makes a third attempt on his life. he learned his lesson last time and ups the dosage hard. except he cant keep it down because he hasnt been eating anything for like two weeks and his stomach just physically cannot handle the amount of medication hes ingesting. so this one fails too. but life goes on and kamimura needs to pay rent! his landlord thinks he is strange and concerning and wants to help him so he manages to get kamimura an apprenticeship with a man named ryōichi katō, a very experienced crime scene cleaner! kamimura EXCELS in this field. hes able to shut off his emotions around blood and viscera - his brain just completely blocks out the horror of it, which is almost a coping mechanism i suppose - but the point is that hes great at it. he starts working full time and it pays the bills well enough so hes got nothing to complain about quite frankly.

except his life still sucks. hes alone. hes sick. he hates himself. everything is bad bad bad bad bad. so at a particularly bad mental low at age seventeen, kamimura makes a fourth attempt on his life. this one has GOT to work because he has been honing this method for years now and SURELY he has worked out the kinks by this point yes? so he downs a shitton of pills, washes it down with cheap booze and passes out. then he wakes up in the Fujioka Memorial High School Basement Laundry Room and now we are here