#neglected diseases

[chagasdiseaseday]

Congenital Chagas Disease: where are the knowledge and research gaps?

In this ISNTD Connect, Dr Marina Gold (Anthropologist & CEO Mundo Sano Foundation) and Elise Rapp (Nurse, Biologist, PhD-student in Social Sciences University of Lausanne and HESAV, HES-SO, Switzerland) present a scoping review of the literature on congenital Chagas Disease and share some of the main knowledge and research trends and gaps. Following a presentation of published work, the discussion highlights the pivotal role of social sciences in tackling neglected diseases, from a better understanding of the social determinants of health to breaking down the barriers to treatments access and lifelong care.

"Congenital Chagas Disease: where are the knowledge and research gaps?" Recorded online as part of the ISNTD Connect series on Neglected Tropical Diseases.

[bioethicists]

it's very important to understand how a personality disorder diagnosis functions in the psychiatric system, even if you identify with the diagnosis or find it useful.

personality disorders on your medical record will be used to discredit anything you say or do. they indicate "don't bother listening to this person; apply treatment regardless of their wishes but also they're probably manipulating/attention-seeking so maybe don't bother treating them". needing support becomes attention-seeking. behaviors that would be treated + supported in someone without this diagnosis are ignored or treated as manipulative. providers are instructed to "withdraw warmth" (a real thing in the DBT provider's manual, btw) in response to self-injury or suicidal ideation.

if you have been dx'd with a personality disorder professionally, you likely understand this.

now, here's the important part: this is not an issue of 'stigma' against a politically neutral, pre-discursive True Disease which is being Unfairly Maligned. these diagnoses were formulated based on the idea that some patients cannot be trusted, that some patients seek care too much. they are applied to patient charts as a justification for withdrawing care or as a dismissal of someone "not getting better" fast enough. in the uk, they are often employed by the nhs to shame or problematize people who use large amounts of nhs resources, arguing that receiving a lot of care through the nhs is a negative behavior stemming from a disordered personality.

there are elements of personality disorders which resonate strongly with many people, including myself, but you need to be clear-eyed about the origins + functions of this diagnosis. as a whole, they were created + function as ways to discredit + mistreat noncompliant or "difficult" patients. 'reclaiming' them is not going to change how they function systematically- it is going to make it easier to engage in this systematic neglect by evoking 'ableism' or 'stigma!' when people question the utility or application of the diagnosis.

[sizzlingsandwichperfection-blog]

Me and my friends have a monthly game night, where we play a game or competition, and the loser has to make a donation to a charity of the winners choosing. Next month is gonna be racing Go-Karts, and I've got this in the bag. Are there any TB related charities you would recommend I send my friends to?

YES. The folks leading the charge at expanding treatment access are:

The Stop TB Partnership

MSF

Partners in Health

The Treatment Action Group (which was founded by ACT UP but has now expanded to seek better treatment for people living with TB as well as HIV).

[lupusbaby]

You’d think would be insulting, but when my loved ones playfully make fun of my disabilities it’s actually so validating and I love it. Like “I could literally just push you over right now and you couldn’t stop me” makes me feel so seen 😭

[the-herdier]

Hmm...

Artemy or Clara accusing a very tired, very overwhelmed, and possibly sick Daniil of having no compassion and receiving the outburst of their lives :).

[sharrkroy]

under the gentle sunlight that beams through the leaves, the flower that blossomed delicately sways above clouds, beyond dreams

[hotvampireadjacent]

Need me someone to pet my head and call me a good boy bc I have every mental Illinois

[healingheartdogs]

I have seen a couple of posts across social medias in the last couple of weeks about rat dogs not being a good recommendation for pest control in place of "barn cats" because dogs are significantly more work than cats are to manage and train and ngl it really annoys me that the neglect of cats is so normalized that people think they need zero management or training compared to dogs, especially when lack of management and training is literally part of the reason they are an invasive ecosystem destroying pest and commonly die horrible and fully preventable deaths outdoors. The real reason rat dogs aren't a good suggestion to people who have "barn cats" is because the vast majority of those people aren't actually using their cats for pest control at all, they are just keeping cats around and neglecting them and calling them "barn cats" as the excuse for why they keep them outdoors unmanaged and untrained (and often without proper vet care).

Cats deserve just as much medical care as dogs, cats deserve just as much management as dogs, cats deserve just as much play and enrichment provided by their owners as dogs, cats deserve to have their exercise needs met in a way that is safe for both them and other animals in their environments just like dogs, cats deserve training to make them easier to live with and contain and safer to interact with for other people and animals just like dogs, cats deserve protection from predators and diseases and parasites they can encounter outside just like dogs. Cats are not low to no effort alternatives to dogs. Throwing a cat outdoors is not a better or easier solution to a pest problem than getting a ratting dog (if that pest problem even actually exists and is being treated with the use of a cat, which I highly doubt in almost all cases), and is still harmful to the environment and dangerous for the cat even if the cat is occasionally killing mice for you (not rats, don't even get me started on cats for rat control, that is actual cruelty). If taking care of one animal is too much work neglecting another animal is not the solution. Use another pest management method that doesn't require you to take care of an animal at all if providing adequate animal care is a problem for you.

If you have mice inside your house or another building or whatever and an INDOOR cat that you use to help control small pests that are coming INDOORS and the cat also stays contained INDOORS where it can't decimate local small wildlife populations and you take care of it and make sure to get it frequent vet care for potential parasites and diseases it may pick up from those pests then this post is not about you. Scroll on instead of "okay but"-ing me, please. This is about outdoor/indoor-outdoor "barn" cats and cats being neglected under the false guise of them being kept around for "pest control". There is no justifiable reason for someone to have an outdoor cat. Calling it a "barn cat" or a "working cat" doesn't make them not invasive predators, doesn't make them not at risk for death by predation, doesn't make them resistant to parasites or diseases, doesn't make them resistant to poisons other people may set out that they get into or the small animals they kill get into and transfer to them, doesn't make them immune to being hit by cars, and doesn't make them immune to potential animal abuse by strangers. If you have ferals that aren't sociable that you're just taking care of at least keep them contained in an actual barn or sheltered catio or something -- not free to roam --and you still need to provide them vet care including neutering them otherwise you're just making more of a problem and still neglecting animals.

[puissantveil]

(CW: Medical stuff) Speculations on Tarkat disease

Starred bits are things inspired by real life diseases. Nothing too graphic, but tread carefully.

The infectious agent is either a bacterium, virus, or microscopic parasite (e.g. Toxoplasmosis). It might be a microbe that's harmless in itself, but causes a horrific inflammatory reaction* in its hosts.

The method of infection is currently unknown, and I hope to god it's not bites/scratches because I hate zombie bullshit. I like the idea of it being spread through contaminated water coming into contact with broken skin for some reason.

Not everyone is susceptible to the disease. Among Edenians in particular, 95% of the population is immune to Tarkat, and vulnerability to the disease is genetic*, meaning Mileena had some really rotten luck. Kitana is either among the 95% or an asymptomatic carrier.

The way Tarkat attacks the brain, skin, and jaws is bad enough, but the inflammation it causes pervades the whole body, resulting in painful systemic symptoms. Headaches, stiff joints*, nausea, liver or anemia symptoms depending on what's causing the jaundiced eyes? Mileena is miserable, she's suffering.

There's a prodromal (before the onset of clinical disease) phase wherein nothing seems wrong physically, but the poor S.O.B. patient is restless, agitated, quick to anger, and generally a cranky handful. Sindel might miss a chance for prophylaxis because she interprets this as her baby girl not taking any shit and going out there and getting that bread.

This is kind of a bleak post, so I want to end it with the idea of Kitana and Mileena embracing in a warm, lingering hug. Crap, now I miss my sister...

[tenisperfection]

I have worked with so many viruses at this point but nothing fucks me up more than rabies does. it's fucked up. FUCKED UP. what do you mean it crosses the blood brain barrier and we can't treat it with drugs because antivirals can't get past the bbb :(

[sacrificialbabylamb]

sometimes it hits me that i wouldve died a very painful and terrifying death if my chronic conditions werent discovered by accident when i was fourteen.

one of my conditions wouldve completely closed my throat. id die of asphyxiation unless by some miracle i had a tube inserted in my throat at just the right time. then, id have to have a feeding tube into my intestines... which were already destroyed by my other autoimmune disorder and couldnt absorb nutrients. so id die of malnutrition. which i already almost did.

[sparethedreamer]

Sick and tired of nurses and doctors having no idea what me/CFS is. Sick of hearing, "I've never heard of that.". So very tired of getting, "I've never seen someone in my office with that." I no longer wish to hear, "I have no idea what that is."

There are an estimated 2.5 million people in the USA (where I live) with myalgic encephalomyelitis. It has an estimated global prevalence rate between 0.2% and 2.8%.

Hello?? Medical community?? You might want to do at least a little bit of homework on this. I know you hate us, but especially with all the new peeps with Long Covid (very similar if not the same illness in many cases) you should at least know a tiny bit about this not-exactly-rare chronic illness.

[thepastisalreadywritten]

17 September 2024

[symptoms-syndrome]

Listen I try not to traumadump but sometimes it happens by accident. Today I found out that an infection I got half a day off in middle school for that ended up requiring (minor) surgery has a 10-20% fatality rate. So that's cool. They did say that they might've had to amputate my foot so I'm glad that that was taken seriously as a threat to my health and not treated as just me complaining about being in pain like I always do (a normal thing for a child/teen to complain about)

[panicguardian]

On January 2021 a doctor almost killed me by prescribing me a medication containing the one compound I’m allergic (anaphylactic) to. Since then I have grown increasingly sicker and distrusting of medical professionals.

I feel myself declining, but the primal fear that takes over me when even considering meeting with doctors, especially new ones, takes over quickly.

My loved ones believe I don’t care about my life and my health, but in reality I’m just scared of the people that could help me.

Oftentimes, they won’t even help. They see you an an isolated issue, write a prescription, let you go, and forget about you.

But me, the person that need to keep living in pain every single day, am still here. Still scared. Still sick. Still in pain.

I want to live and I want to get better, but I’m drowning in hopelessness after years of being neglected or mistreated by medical professionals.

All I can do is hope one day, somehow, it will get better.