Katawa Shoujo Forums

neio wrote:

Numb wrote: I've lost my sense of smell already, and that in turn has reduced my taste slightly. Oddly enough, my hearing has improved through all of this.

I've heard losing smell can be quite traumatic. Was yours a gradual loss, and does it bother you much?

Pandas wrote: Hence that name numb? Woah, thats instense O.o

Forever_ambivalent wrote:It's really annoying how much of a jerk people can be towards people with these conditions. It isn't the nicest thing when people are being so negative about your condition but I suppose other people here have had it a lot worse.

hdkv wrote: ↑Mon Oct 16, 2023 1:58 pm

Well, I'm legally blind ¯\_(ツ)_/¯

Better than being illegally blind!
As for me, I have a (fairly, if such a thing can be called that) mild case of cerebral palsy with spastic diplegia, I also have a VP shunt.

Hello, new poster to the forum. I see the poll is long gone but figured I would hang out and say hello.

As of posting, I have visual disabilities and am blind.

1. Retinopathy of Prematurity Stage 4 with Lattice Degeneration.
2. Missing Vertebra in my spine.
3. Venous insufficiency.

If anyone has any questions, I'd be more than happy to answer them.

Browsing the forums and randomly coming across this thread, so just wanted to contribute to the statistic. Would love to see how many people voted blank to compare but oh well, what can you do with a 14 year old post.

As for me, I have Ehlers-Danlos syndrome, a somewhat rare (mostly due to missed diagnoses if you ask me) genetic connective tissue disorder. It affects... basically everything, because connective tissue tends to, you know, connect stuff. I'd say my case is on the milder side of the spectrum and most related issues are under control, but I already have osteoarthritis and suffer frequent dislocations (particularly on my shoulders and hips) and I have pathologically bad balance due to terrible proprioception. I use a collapsible cane from time to time that I always carry in my backpack, but other than that I seem healthy from an outside perspective.
I also happen to be autistic which funnily enough is a common comorbidity of Ehlers-Danlos, but I guess that doesn't count! Wouldn't be able to tell which one is more 'disabling' either, lol.

I have a neural tube defect called spina bifida myelomeningocele, with a whole litany of complications. I think that, and the fact I also was a wheelchair track athlete in high school, is what made KS so relatable for me.

I'm not a native English speaker, so I used a translator.

I have an arrhythmia.

Not only that, but my lungs and liver are not in good shape.
I had pneumonia as a child, and the medications I was on as a child were enough to damage my liver.
I also have dermatomycosis and farsightedness.

Well, I think I'm pretty healthy, though.

I'm new here

I have total deafness that I had as a child that started as mild to total.

I currently hear through a conchlear implant (not completely well as a hearing person).

All I know is that ever since I started college, my arms have been acting up and it has made keeping up with the hobbies I had before a complete nightmare (used to play cello and game a lot, now I don't do that). My primary care doctor said it was carpal tunnel. The physical therapist I got referred to said it was tendonitis. I'm having an EMG test done in a few months to see if they can figure out what's actually wrong with me (not looking forward to the needles, even though my daily pain is generally worse than a butterfly needle) but for now I'm just going to continue physical therapy and enjoy the fact that I at least got a note from the doctor about the carpal tunnel to hand to my school. It's considered temporary though so I have to get another note from a doctor. Guess I can send them my EMG results?

Also sometimes my knees and thighs feel weird but I can still walk and shit so not too much of a disability for now (just kinda annoying). Probably will be in 5-10 years though lol

Getting back into Katawa Shoujo has really been comforting ever since becoming physically disabled. I haven't reread the VN in a bit (waiting to see if I can get my partner into it so I can read it with them), but the fancontent really helps make me feel less alone.

Retornodelogay wrote: ↑Fri Feb 02, 2024 4:00 pm

As for me, I have Ehlers-Danlos syndrome, a somewhat rare (mostly due to missed diagnoses if you ask me) genetic connective tissue disorder.

Oh shit I like your fic! Anyway, onto something more relevant, my partner is suspecting they have EDS. If you don't mind answering, how did you end up getting it diagnosed? Would like for my partner to have something on paper as soon as they're able to see a doctor. And out of curiosity (you also do not have to answer this one), is your skin extra stretchy and squishy too? My partner's is, and they suspect it to be part of the whole connective tissue dysfunction.

My last physical therapist (I don't have a current one yet but I plan on getting one closer to my college as soon as I get the motivation) said something about how more and more people are getting diagnosed with EDS these days, so that definitely backs up the missed diagnosis thing.

I was on vacation so I wasn't able to respond, but glad to help

MagicalMelancholy wrote: ↑Sat Aug 17, 2024 10:26 pm

I'm having an EMG test done in a few months to see if they can figure out what's actually wrong with me (not looking forward to the needles, even though my daily pain is generally worse than a butterfly needle) but for now I'm just going to continue physical therapy and enjoy the fact that I at least got a note from the doctor about the carpal tunnel to hand to my school.

I know you didn't ask for my input on it, but I have endured my fair share of EMGs and evoked potentials. While uncomfortable, I've never felt they were as bad as what they tried to warn me. Hope it goes well

MagicalMelancholy wrote: ↑Sat Aug 17, 2024 10:26 pm

Retornodelogay wrote: ↑Fri Feb 02, 2024 4:00 pm

As for me, I have Ehlers-Danlos syndrome, a somewhat rare (mostly due to missed diagnoses if you ask me) genetic connective tissue disorder.

Oh shit I like your fic! Anyway, onto something more relevant, my partner is suspecting they have EDS. If you don't mind answering, how did you end up getting it diagnosed? Would like for my partner to have something on paper as soon as they're able to see a doctor. And out of curiosity (you also do not have to answer this one), is your skin extra stretchy and squishy too? My partner's is, and they suspect it to be part of the whole connective tissue dysfunction.

My last physical therapist (I don't have a current one yet but I plan on getting one closer to my college as soon as I get the motivation) said something about how more and more people are getting diagnosed with EDS these days, so that definitely backs up the missed diagnosis thing.

First of all, thank you very much! I'm so glad you're enjoying it. Second of all: I don't mind! But I live in Spain so unless your partner does as well, I suspect the process would be way different. For me it was quite a journey. Funnily enough I developed a hyperfixation on the disorders almost ten years ago, never suspecting they had anything to do with me, which ended up with me catching my own girlfriend's diagnosis shortly after starting our relationship. My health had been steadily worsening for a couple of years before the diagnosis, but it seemed to be a host of unrelated issues which were treated symptomatically, without a common thread: some immune weirdness here, a neuropathy affecting my lower limbs there, generalized joint pain and a long etcetera... Funnily enough it was my partner who pushed me to see their internal medicine doctor, who diagnosed me and explained all my previous issues in one fell swoop. Textbook case, as she called it. She's one of the very few specialists on collagen disorders we have here, so I consider myself quite lucky, since public health covered everything: echocardiogram, genetic testing, blood tests, and of course the visits themselves.

My skin is stretchier, softer and squishier than normal, though nothing too extreme, my partner's case is way more obvious. I do have my fair share of papiraceous scars, which are often important during the diagnostic process.

It could definitely be a case of missed diagnosis. Some phenotypes seem to be way more common than we previously thought, and I argue it's actually not a rare disorder at all, it just flies under the radar more often than not, since the signs are somewhat subtle and the range of related issues is so incredibly wide. I hope they get the care they need, and if there's anything else I can help with do feel free to reach out.