The study mentions CD11c+ B cells aka Ageing B cells (ABCs). These have been detected in other autoimmune conditions and are hypothesized to be pathogenic.
A Spanish teen’s genome may hold the secret to lupus
41–50 of 79 posts
Re: A Spanish teen’s genome may hold the secret to lupus
#42Earlier quoted context omitted.
Such a sad story. With women the experience is typically worse on average when they talk to doctors as the doctors even female one trust them less than male patients. Even feminists advise to go to a doctor with a husband or male relative or friend and let them do the talking.
I'd never heard that, but it sounds to me like the other side of the same coin regarding what's commonly said of men: that they delay going to the doctor for too long as symptoms progress, or even don't go at all unless insisted upon. It could be that, on average, doctors become accustomed to the idea that when a man visits them it must be very serious, and therefore when they are visited by women they generally disp…
Men get routinely ignored, disrespected and misdiagnosed as well. The doctor-patient relationship is adversarial (when facing someone you don't already know), what matters is not what they choose to give you, it's what you can take from them. This is why people who are more assertive and confident will generally do better, as well as people who come in groups.
Re: A Spanish teen’s genome may hold the secret to lupus
#43I work in a Spanish university (yes, I'm a filthy academic) and just the other day we were running experiments using a research tool in relation to this new variation of TRL7. This tool is a genomic variation database aggregator that tries to act as an "oracle" of the clinical significance of the variations by running an AI algorithm on the harvested data. Very cool stuff, in spite of my area not being directly related to bioinformatics :)
Re: A Spanish teen’s genome may hold the secret to lupus
#44[dead]
Re: A Spanish teen’s genome may hold the secret to lupus
#45I'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…
I've been struggling with the same sort of thing for 8 years now. I've been to dozens of doctors in several different countries but never got a proper diagnosis. From my own research and observations I'm quite confident it is, as you elude to, an auto-immune related disease. The two major triggers for me are exercise; particularly anaerobic e.g weightlifting, and alcohol. Alcohol actually alleviates the symptoms for…
I've been dealing with autoimmune issues for years as well. I have yet to find a doctor that is willing to help me get to the bottom of it. I too have seen doctors in multiple countries.
For me, the trigger is carbohydrates. Doesn't make having a good social life easy. I'm on a forced ketogenic diet because of it.
Re: A Spanish teen’s genome may hold the secret to lupus
#46Earlier quoted context omitted.
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 do…
Keep in mind that the alternative is for doctors to routinely dismiss problems as anxiety.
Many conditions can take dozens of doctor visits and years to get a correct diagnosis. Many doctors are not up to date or even aware of common conditions.
People that have a chronic condition are continuously called hypochondriacs. There are a lot of people that basically tell them to shut up and just pretend everything is okay
Re: A Spanish teen’s genome may hold the secret to lupus
#47I'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…
My personal theory is that many long covid cases are people who developed autoimmune diseases either from covid or around the time they got covid.
Re: A Spanish teen’s genome may hold the secret to lupus
#48I'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…
The NHS seems to think that Fibromyalgia is more mental than physical. [1] Anecdotally amongst my facebook friends the people that do have it also seem to be the people that self-report mental health struggles and anxiety. It seems to be much like ME in that regard.
Re: A Spanish teen’s genome may hold the secret to lupus
#49My 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…
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…
How do you get doctor recommendations? How do you know that the recommender was able to properly evaluate the care they received (especially in the presence of not yet solved issues like back pain, and non-issues like "sometimes my nose gets stuffed up" which goes away regardless of what the doctor does)?
Re: A Spanish teen’s genome may hold the secret to lupus
#50Earlier quoted context omitted.
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 do…
Keep in mind that the alternative is for doctors to routinely dismiss problems as anxiety. Many conditions can take dozens of doctor visits and years to get a correct diagnosis. Many doctors are not up to date or even aware of common conditions. People that have a chronic condition are continuously called hypochondriacs. There are a lot of people that basically tell them to shut up and just pretend everything is okay
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