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may is lupus awareness month in the US, and may 10th is world lupus day! here's an educational thread about lupus, written by someone who has lived with it for years!
thread!
thread!
disclaimer before i start--i'm not omniscient about this disease. however, i have lived with it for ~4 years now, and even before then knew extensively about it due to having two close family members with it.
without further ado!
without further ado!
WHAT IS LUPUS?
first, let me say that what i mean when i say "lupus" is specifically SLE, or ystemic lupus erythematosus. there are other types, but they are typically referred to with their full names. for the this thread, we will specially be discussing SLE!
first, let me say that what i mean when i say "lupus" is specifically SLE, or ystemic lupus erythematosus. there are other types, but they are typically referred to with their full names. for the this thread, we will specially be discussing SLE!
lupus is an autoimmune disease which targets tissues all over the body--what this means is that the antibodies that typically fight illnesses instead fights healthy tissue
keep in mind, healthy tissue can also include organs such as the kidney, heart, or brain. when there is organ involvement, there is typically a specific condition name
for example, "lupus nephritis" when lupus is attacking the kidneys
for example, "lupus nephritis" when lupus is attacking the kidneys
SYMPTOMS OF LUPUS
lupus has a wide range of symptoms, which become even wider depending on different organ involvements. and even then, every patient has a different collection of symptoms!
the most common symptoms are:
-painful+swollen joints (lupus arthritis)
-fever
-chronic pain
-hair loss
-mouth ulcers
-swollen lymph nodes
-chronic fatigue
-and a former "staple" of a lupus diagnosis, a facial rash known as a butterfly rash. more on this later!
-painful+swollen joints (lupus arthritis)
-fever
-chronic pain
-hair loss
-mouth ulcers
-swollen lymph nodes
-chronic fatigue
-and a former "staple" of a lupus diagnosis, a facial rash known as a butterfly rash. more on this later!
often with lupus patients, the disease runs a course of "flares" (periods of illness) and "remissions" (periods with little or sometimes even no symptoms)
flares can have many different triggers, and are often different person-by-person. for me personally, sunlight and extensive exercise tend to trigger flares for me! but everyone is different
HISTORY OF LUPUS
lupus has been documented for milennia! the oldest (surviving, that we know of) record of lupus comes from 400 BCE, from Hippocrates (who classified it as a type of herpes ..), but it becomes more extensively documented post-1300, where it was named lupus!
back to the butterfly rash! the name "lupus," meaning wolf, is due to the butterfly rash that appears on a majority of lupus patients' faces--it was said to resemble a wolf bite, and so it got its name!
there a huge number of old medical sketches of lupus patients that are still surviving today and can be found on the internet! here are some below! you can see the "wolf bite" look of the butterfly rash
despite being officially recognized and named since the 14th century, however, it wasn't until the late 19th century, when studies were done to shown lupus was not a dermatological disorder, as it was thought for hundreds of years, but a systemic disorder
this was groundbreaking in lupus research progress, allowing immunology to be applied to lupus treatment!
however, even as recently as the 1950s, most people with SLE lived fewer than 5 years post-diagnosis
however, even as recently as the 1950s, most people with SLE lived fewer than 5 years post-diagnosis
but! today, 90% of patients live 10 years post-diagnosis, and 80-90% can expect the lifespan of a healthy person!
and the butterfly rash that was considered so indicative of lupus back then has since been discovered to only occur in the majority of cases--there are still a great number of lupus patients with no butterfly rash (of which includes me and my family members!)
WHAT CAUSES LUPUS?
we genuinely have NO idea!
let me go into more detail. we know what can lead people to be more Likely to develop lupus, but we ultimately have no idea why the antibodies, to put it in humorous terminology, go totally insane bonkers
there have been several risk factors identified, but even people with these risk factors may not develop the disease. i'll go over the risk factors!
the largest risk factor (afaik) is genetics, especially from a direct family member. for me, i had direct relatives from both sides of my family with lupus! but their knowledge also made me know what symptoms to look out for :)!
lupus is also more common in afab people, with amab cases being rare to the point that my dad went misdiagnosed for years due to doctors thinking he couldn't have lupus at all
CLOSING STATEMENTS
this thread is getting fairly long, so i'll wrap this up here! for extra reading, i highly recommend the lupus foundation of america! they're a nonprofit that does amazing work for lupus patients and research! https://www.lupus.org/
lupus patients do live with a chronic illness and disability that affects every aspect of our lives--but, in today's time, it's possible to live way longer lives with comparatively fewer symptoms than in the past!
thank you so much for reading my thread! if you have any comments, please QRT! i disabled comments so that the thread wouldn't break
