#neglected diseases

[scientificinquirer-blog]

Researchers leverage large-scale data to uncover new insights into rare diseases and COVID-19

An England-wide study of over 58 million people has identified eight rare diseases that carry significantly increased risks for COVID-19-related mortality in fully vaccinated individuals. This important research calls for better inclusion of rare diseases in public health strategies, including future pandemic planning, vaccination policies, and NHS service provision. Historically rare 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 😭

[mxescargot]

sollux terezi disabled solidarity is very real to me they both have migraines and deteriorating vision and probably medical trauma and.

[emphasisonthehomo]

However you might feel about Jimmy Carter, one of the things he was very focused on during his lifetime was the eradication/treatment/research of neglected tropical diseases.

The World Health Organization defines them as:

Neglected tropical diseases (NTDs) are a diverse group of conditions caused by a variety of pathogens (including viruses, bacteria, parasites, fungi and toxins) and associated with devastating health, social and economic consequences. NTDs are mainly prevalent among impoverished communities in tropical areas, although some have a much larger geographical distribution. It is estimated that NTDs affect more than 1 billion people, while the number of people requiring NTD interventions (both preventive and curative) is 1.6 billion. The epidemiology of NTDs is complex and often related to environmental conditions. Many of them are vector-borne, have animal reservoirs and are associated with complex life cycles. All these factors make their public-health control challenging.

One of these is the Guinea Worm, which is a debilitating parasite that President Jimmy Carter hoped to eradicate during his lifetime. He was unfortunately unable to do so.

Guinea worm disease (dracunculiasis) is a parasitic infection caused by the nematode roundworm parasite Dracunculus medinensis. It is contracted when people consume water from stagnant sources contaminated with Guinea worm larvae.

There is no known cure for the Guinea worm, the same treatment used today has been in use for thousands of years.

It is on the verge of eradication, and many hope for it to become the second disease eradicated after smallpox. Only 14 human cases were reported in 2023.

The easiest way to help prevent someone from being infected with the Guinea worm is by providing safe water.

The Carter Foundation is dedicated to the eradication of the Guinea worm and accepts donations.

[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 :).

[hotvampireadjacent]

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

[twentyfivemiceinatrenchcoat]

knight!reo or knight!barou 🎤 who is more devoted

[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...

[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.

[khajiitclaws]

I think I’ll make an oc page