#Immunodeficiency

[wheelie-sick]

I'm so sick of the lateral ableism from disabled people with working immune systems. I fucking despise hearing about other disabled people are completely disregarding covid precautions. you might get to forget about it like all the ableds did but I don't.

you don't get to align yourself with disability activism in any way if you're choosing not to mask, or choosing not to stay updated on vaccines, or choosing to go to giant events with thousands of people in attendance

[liminalweirdo]

[image id: two screenshots of four tweets by user lisa_iannattone on Twitter, posted on 19 December 2022 at 1:14 p.m., reading sequentially: "It's absolutely wild to me that we're pretending that the higher than average number of respiratory tract infections and the pandemic of adults with pneumonia this year is not a warning sign of immune impairment. This is literally how immunodeficiency would present.In clinical practice, we we want to screen for the possibility of an undiagnosed underlying immunodeficiency syndrome, "how many respiratory infections do you get in an average year?" and "have you had pneumonia more than once?" are the 2 first questions we ask.There's been more pneumonias among my healthy adult friends & acquaintances in the last 6 months than among my immunosuppressed patients in the last 6 years. Something is clearly off. And healthy adults with pneumonia is not a viral transmission dynamics issue.This thread blew up and some people aren't sure if I'm suggesting immunity debt. Definitely not. Staying healthy doesn't make you sick, pathogens do. As for the immunity "gap", it's likely a contributing factor but doesn't explain adults with pneumonia. It's SARS2 I'm worried about.

end image id]

hey, the pandemic is not over. wear a mask.

in case this is unclear, immunocompromised, immunosuppressed, and other disabled people are not getting sick the same way as healthy adults because they are masking the fuck up and/or still largely being forced to isolate, while many many “healthy” adults are not. just because you are healthy doesn’t mean you are immune to long-term effects from covid. anyone can become disabled at any time. immunity debt is not real.

do your part to protect yourself and others. not wearing a mask is worse than ableism. It’s disablist.

Please at least wear masks in public indoor, and crowded outdoor spaces. Make public spaces safe and accessible for everyone.

[curiositysavesthecat]

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[doelet444]

there’s so much I want to be. will my body please allow me?

[bpod-bpod]

Essential for Life

Cytoskeleton protein ARPC5 is important for prenatal development and for function of the immune system after birth – inheritance of a faulty ARPC5L gene causes early-onset immunodeficiency

Read the published research paper here

Image from work by Elena Sindram, Andrés Caballero-Oteyza and Naoko Kogata, and colleagues

Institute for Immunodeficiency, Center for Chronic Immunodeficiency, Medical Center, Faculty of Medicine, University of Freiburg Germany and Cellular Signalling and Cytoskeletal Function Laboratory, The Francis Crick Institute, London, UK

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

Published in Disease Models & Mechanisms, July 2023

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[thateclecticbitch]

They should invent an immune system that helps the body fight infections and other diseases.

[simpforcatsystem]

You know, I think the worst thing about being chronically ill is the constant knowledge that one day you could just be too much for people. They could just throw up their hands and walk away, despite the fact that most of it is something you have no control over, despite the fact that you tried your hardest to make it up for them. Despite the fact that they love you, and you know they do.

There's constantly a pressure to be better, to be perfect, to recover, and you know it's an unobtainable goal. The more you try to drive yourself to it the more they'll expect it from you and the more they'll be disappointed and dismissive when you fail. But if you don't, you're too much and you're seen as not trying hard enough, not giving enough. As if you want to be sick and cared for all the time. It makes them leave faster.

You constantly make demands on others that you yourself would find unreasonable without understanding the source, and you know most people don't understand. They don't understand that you won't ever get better. They don't understand why, and most of the time you don't either.

If you push yourself too much, eventually you start to believe it too. "I'm fine, I got over this last wave so I'm better now. I'm fine, it's only a minor wave, I can work through it. I'm fine, it's only a migraine from stress. I'm fine. Why am I not fine?"

I don't know if I'll ever get over the subconscious bias that I should be fine, that I'm making it up, that I'll recover eventually. I feel like I'm constantly mourning the life I could've had, and at the same time believing I still could have it if I just work hard enough, push myself far enough.

But the truth is that'll never happen.

The cognitive dissonance is enough to make someone have a breakdown, between where they are and where they feel they should be, where they're told they should be. I don't feel I'll ever catch up to that standard.

[thatdoesntsuck]

Reorder Review

I’m on the phone with the specialty pharmacy making my first medication and supply reorder for my now at home Immunoglobulin Infusion Therapy. Here’s a little snippet of the conversation: Beleaguered employee answers my call and with absolutely no vim nor vigor starts with: Hello. Thank you for calling Accredo. This is Mel (sigh) how may I help you. Me – Hey Mel! (Totally masking that all I…

[curiousacademic]

I hate being immunocompromised so much. Like, every single year within a month of back to school I'm sick as a dog and my entire body hurts because y'all either come to school sick or are carriers.

[wheelie-sick]

shout out to my rheumatologists office for continuing to be covid safe!!!! all the love for my rheumatologist (who also has an autoimmune disease and is on immunosuppressants)

[the-farmers-rabbit]

Sick Season with Mason

Hi!! This is going to be like a master post for me so it will be long but it’s something I like to help with.

To start, I’m going to give background as to Why i’m qualified for what i’m talking about. I’m currently (as of december 2022) 18 years old. It’s my first year of uni and i’m living in a dorm after 18 years at home. In elementary school, my little body had a tendency to get super sick for long periods of time until I got on allergy meds. It was just seasonal stuff that turned into sinus infections and stuff like that. It would keep me home for weeks at a time which is no good for a kid. 

Flash forward to high school. Before and after covid (it hit in my junior year), I would have a tendency to get sick for months at a time. Not super sick, none of it ever warranted an ER trip or being in a hospital. But I would have a cough that would just. stick with me. for month long periods of time and it would only go away once I got antibiotics.

Now, I’m in college and it’s most of the same. I’ve realized that I might have some immunodeficiencies (my mother has a fucked up immune system but the other way around, so it’s not unlikely for me) and I’ve been out on my own for a bit now so! Here are some tips for when you get sick/how to keep from getting sick.

This covers colds, coughing, sore throats, and fevers. Really any thing that isn’t stomach bugs. So don’t come at me for not having that stuff (not that you all would, just wanting to tell y’all)

Fluids/Food 

Water. I always have a water bottle by my bed for this reason. In case i wake up with cotton mouth or just need water. it’s right there. 

Gatorade! for when i’m actually sick, i have a pack of gatorade in my dorm. it keeps my blood sugar from getting super low if i don’t have the energy to eat, it gives me something to run on, and it’s hydrating

apple juice. i use the little boxes of it cus my brain likes those, but just a juice in general is good. all this boils down to is keeping yourself hydrated. very important when sick/trying to avoid getting sick

Yogurt! If you’re on antibiotics, you need to get the good bio back. I really like the activia yogurt drinks. they’re really tasty and really good for me. Plus, if you have a sore throat, dairy coats it and makes it hurt so much less

Medications

Ibuprofen. so this one might be obvious. It isn’t a cure all! But it works wonders for a lot of things. Fevers, aches, sore throats. It will reduce a fever, and i always keep some by my bed for that reason

-Fevers; if you don’t take care of them quick, you could have serious issues. I mean it. Your brain is overheating. You won’t be able to think straight and you will feel awful. keep stuff that will break them near by just in case.

-Signs of a fever!: Cold, but the room isn’t cold, sweaty even though you’re freezing, shaky, foggy head. and when in doubt, take your temperature. 

Vitamins. I don’t like the pill vitamins. They’re big and icky. So, I take gummy vitamins. Yes i’m an adult, I take gummy vitamins. So? I use the brand Smarty Pants. I get them at target. They’re not icky, they’re fairly cheap, and they’re good. They have childrens and adults. get ‘em

Sleep aids. Olly Sleep Gummies are what I use. When I’m sick and just. can’t relax? Melatonin gummies. Olly is good because it’s not Just melatonin, it’s also some other junk. They also don’t taste that bad.

Self Care/Comfort

Sleep. Just like the sleep aids, when you’re sick or getting sick, sleep is so very important. Weighted blankets are a great help. If you’re coughing a lot, prop yourself up so you don’t have a coughing fit in the middle of the night. Cold compress for fevers, and fans to keep you comfy. Sleep is the best cure, and be sure you get it

Showering. I don’t care if you prefer baths. If you are sick and it is in your sinuses, take a shower. sit down (if it’s not too grody wherever you are) and just let the hot water hit you. The steam loosens mucus and you can dislodge it a lot easier

Humidifier!!!! PLEASE MAN. It’s a life saver. I got mine at target. It was like $30 and takes up about 1.5 cubic feet. If i have a stuffy nose or a sore throat or both, i turn that on, go to sleep, and wake up with neither. it is a god send. 

Brush your teeth. I know you feel gross. But go and brush your teeth. And if you can’t, floss and use mouth wash. Do something that cleans the gunk in your mouth. You will feel better after, I promise

Heating pads. Mine was 15 bucks at kroger. I use it every damn day. On my lap, as a blanket, on my shoulders, back, tummy. Any and everything. Heat relaxes the muscles, and warmth is also nice. I’d recommend one that has an auto turn off so you can sleep with it. But if not, just get one.

Gem Face Roller. Ok. let me explain. I don’t use this for skin care. I use it for headaches. it’s cold (and if it’s quartz, it will just. be cold. on it’s own), i can put light pressure on what hurts. I can use it on sore necks too.

Lanolin. It’s meant for nursing mothers for chapped nipples but it’s so good for chapped lips. And when you’re sick, that usually happens and you usually need help with it. So, lanolin. Also at target

Icepack. Either like a bag, or a gel. Don’t get one of the hard ones that are meant for food. Get one that is Made for the body. For when you’re overheating, or you’re achey or. whatever. Ice. Helps

thermometer!!! So you can see if you have a fever or not! I keep mine on hand and it gives me peace of mind. Got it at walgreens when i stopped to get my ice pack. Like 15 bucks, again. Keep yourself from worrying too much

ok so that’s probably it for now but i hope it helps! I’ll add on if I think of something, love you guys, good luck out there

[littleghoulghost]

I have one more ask left, hoping to get it out anywhere from today to tomorrow. But I woke up sick, and just feel like hot garbage. So the ask depends on how I'm feeling when I get around to writing it.

[drpedi07]

Digeorge Syndrome

DiGeorge syndrome is a genetic disorder due to deletion in Chromosome 22 This leads to abnormal and poor development of the parathyroid gland, thymus and heart.

[yassifiedrumpelstiltskin]

guys i dont trust the medical industry because it gaslights any and all marginalized groups and is inherently built on a business, helping people second model, not because tHe dOcToRs ReFuSiNg To GiVe Me AnTiBiOtIcS aNd I kNoW bEtTeR

PLEASE stop taking antibiotics for everything. we r making super bugs, and generally speaking if u r a person with a healthy immune system ur body is literally designed to heal itself (within reason, go to the doctor if u r truly sick and can afford it) and if u DONT have a healthy immune system

aCTUALLY IT DOESNT MATTER BECAUSE ANTIBIOTICS STILL WONT DO SHIT FOR A VIRUS BUT BY OVERUSING THEM WE ARE SCREWING EVERYONE BUT ESPECIALLY IMMUNOCOMPROMISED PEOPLE OVER

and dont get me started on how doctors are encouraged to prescribe them because money money money vs just sending someone home to get better (again to reiterate obviously they should give care if someone is truly sick)

[spoonful116]

Why I'm masking still