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A Spanish teen’s genome may hold the secret to lupus

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11–20 of 79 posts

Re: A Spanish teen’s genome may hold the secret to lupus

#11

My mother had Lupus. It's kind of another "American medicine failure" story. She'd go to the doctor's office and get berated for being a painkiller junkie even though she never once asked for painkillers. Doctors would just look at her record and assume. When she finally did get a doctor that tried to help, she got put on this weird steroid that made her body a little stronger but at the cost of some brain fog. She w…

What is in a Lupus patient's chart that causes doctors to think they are drug seeking?

Re: A Spanish teen’s genome may hold the secret to lupus

#12

Earlier quoted context omitted.

You should elaborate

There's a not insignificant number of people who think they have lupus who, in reality, most likely do not, to the point where lupus has become something of a meme. It's characteristic of autoimmune disorders to be absolute pains to diagnose correctly as well as they often share symptoms with other disorders and entirely unrelated conditions (e.g. if you keep getting rashes that could be any number of autoimmune diso…

Seems like something a complete cell count could identify.

Different upregulation depending on immune pathway and recognition type.

Re: A Spanish teen’s genome may hold the secret to lupus

#13

My mother had Lupus. It's kind of another "American medicine failure" story. She'd go to the doctor's office and get berated for being a painkiller junkie even though she never once asked for painkillers. Doctors would just look at her record and assume. When she finally did get a doctor that tried to help, she got put on this weird steroid that made her body a little stronger but at the cost of some brain fog. She w…

I am sorry for your loss you and your mother had to go through. I don't think I have ever experienced frustration at the level that you have working with the medical system in US.

Re: A Spanish teen’s genome may hold the secret to lupus

#14

Earlier quoted context omitted.

Sorry to hear about the negative experience. When helping a family member through some health problems long ago, I learned that many of the primary care doctors that are easiest to get into are also some of the worst for dealing with complex problems. It makes sense when you think about it - Doctors who provide poor care or who assume the worst from the patients are the least likely to retain patients and therefore t…

Chronic illness, and various autoimmune forums on Facebook / Reddit are great resources for learning. What tests to get. What sort of doctors to see. What works and doesn’t work. Tips dealing with doctors.

They can be good resources, but depending on the condition they can also be a huge source of misinformation. Don’t take any one group too literally because some of them become echo chambers of misinformation and actively hostile to anyone who disagrees.

There are even a few chronic conditions that attract a lot of incorrect self-diagnosed people who insist they have the condition despite every test suggesting they don’t. For example, many people self-diagnose as having various thyroid disorders based on vague symptoms (or WebMD, etc) but won’t let go of the diagnosis when all of their thyroid tests come back perfectly normal. This leads to weird social media bubbles where people insist the tests are wrong and start sourcing their own medications, with predictably bad results.

Low testosterone is the current big trap for men. You can find social media groups that claim that testosterone is basically a cure-all and that the current reference ranges are far too low. Again, they’re usually quite confused when they finally get a testosterone prescription and it doesn’t fix all of their problems like the Facebook groups or TikToks led them to believe.

Be careful out there.

Re: A Spanish teen’s genome may hold the secret to lupus

#15

My mother had Lupus. It's kind of another "American medicine failure" story. She'd go to the doctor's office and get berated for being a painkiller junkie even though she never once asked for painkillers. Doctors would just look at her record and assume. When she finally did get a doctor that tried to help, she got put on this weird steroid that made her body a little stronger but at the cost of some brain fog. She w…

Western health care philosophy is just so terrible for these classes of diseases that are just not well understood.

Re: A Spanish teen’s genome may hold the secret to lupus

#16

My mother had Lupus. It's kind of another "American medicine failure" story. She'd go to the doctor's office and get berated for being a painkiller junkie even though she never once asked for painkillers. Doctors would just look at her record and assume. When she finally did get a doctor that tried to help, she got put on this weird steroid that made her body a little stronger but at the cost of some brain fog. She w…

Damn that is a lot, I'm sorry. I can imagine it's hard to find peace with those circumstances.

My sister is experiencing these symptoms too and puts it on MS, but doctor can't confirm and in the meantime basically medical system is zero help. Canada is a bad place to be debilitatingly ill but not visibly bleeding out.

Re: A Spanish teen’s genome may hold the secret to lupus

#18
I've been quite interested in auto-immune diseases lately. I have a friend with fibromyalgia which latest tests[1] have shown to potentially be an auto-immune disease. The symptoms are similar to lupus, and also similar to what I hear people report as long covid. I don't have a background in medicine, but these all seem related and are all poorly-understood and treated.

It is frustrating to watch as those affected have to fight every day just to get the energy to live their lives, constantly changing diets and routines just to try to make sense of what triggers flare-ups in their condition.

[1] https://www.jci.org/articles/view/144201

Re: A Spanish teen’s genome may hold the secret to lupus

#19
post #18

I've been quite interested in auto-immune diseases lately. I have a friend with fibromyalgia which latest tests[1] have shown to potentially be an auto-immune disease. The symptoms are similar to lupus, and also similar to what I hear people report as long covid. I don't have a background in medicine, but these all seem related and are all poorly-understood and treated. It is frustrating to watch as those affected ha…

since you're interested, may i present my childhood illness?

https://en.wikipedia.org/wiki/Periodic_fever,_aphthous_stoma...

Re: A Spanish teen’s genome may hold the secret to lupus

#20

When I see headlines like this, I ask myself: "Is it really necessary to include the nationality of the person if that has nothing to do with the matter at hand?" In this case, a better title would have been "a teen's genome may hold ...".

Extremely important for those doing the research. In order to get funding they must raise awareness and be memorable.

They are the ones that uses that teen’s genome, so every press release must mention “the Spanish teen”. It’s branding.

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