A Spanish teen’s genome may hold the secret to lupus
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A Spanish teen’s genome may hold the secret to lupus
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Re: A Spanish teen’s genome may hold the secret to lupus
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Re: A Spanish teen’s genome may hold the secret to lupus
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Re: A Spanish teen’s genome may hold the secret to lupus
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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 disorders or none at all, and more likely to be some environmental allergy than lupus).
Re: A Spanish teen’s genome may hold the secret to lupus
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#7Re: A Spanish teen’s genome may hold the secret to lupus
#8My 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 was on that drug for 10-odd years before going to a different hospital on a whim. The new doctor concluded that actually the Lupus wasn't even active. It was in remission and had been for years. Turns out, the previous doctor was skipping some routine tests because the results were always the same.
Mom got off the drug and her mind got better but her body didn't. Off the drug, she was basically in the same physical state as she was on the drug. Couldn't walk or even sit down for more than a couple hours without pain. So what's going on? She started getting her bones checked to see if there was some kind of alignment problem. There was some old film of her as a toddler that showed her walking funny, and she also once had a bad accident doing sports, which seemed like potential evidence for something skeletal.
Before she could figure anything else out, she found a lump and got diagnosed with cancer. It originally looked like regular breast cancer but the breast cancer chemo didn't work. Turns out it's this super-rare "meta-plastic" cancer that nobody at the hospital had ever seen before. She just went through palliative care and hospice then died only a year after finding the tumor.
Turns out there were some studies saying the drug she was on for longer than necessary is correlated with rare cancers. Unfortunately I don't have the name of the drug or the details of the cancer on hand right now. Anyway, it's cool to see some research that might eventually help Lupus patients avoid getting yelled at for popping pills (even when not actually popping pills).
Re: A Spanish teen’s genome may hold the secret to lupus
#9My 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 the most likely to have openings.
What worked for us was finding a primary care doctor who was recommended by others, even if the wait for a new patient appointment was measured in months or years. From there, the PCP was used as a pivot point to get to specialists who knew what they were doing and as a contact point for basic medication management. Letting PCPs try to manage complex conditions is a mistake, IMO.
I should mention that this failure mode isn't unique to American medicine. The same dynamic plays out in many countries and indeed in many industries beyond medicine. Getting into the experts who know what they're doing is hard because they're in the highest demand. Getting into below-average providers of any profession is always easy because they're not buried under referrals and people knocking on their door.
Re: A Spanish teen’s genome may hold the secret to lupus
#10My 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…
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.