Emerging Risk Biomarkers in Cardiovascular Diseases and Disorders - Upadhyay - 2015 - Journal of Lipids
I'm A Doctor — Beware This 'cruel Mystery' Disease That Can Permanently Damage Organs
It's a bone-a-fide mystery.
Joint pain, hair loss and fatigue are clues that can point to various conditions. One in particular has been throwing people for a loop even as 16,000 new US cases are reported annually.
Lupus is sometimes called a cruel mystery since it can take many years for patients to be accurately diagnosed.
The chronic autoimmune disease is unpredictable and often has subtle symptoms that are easily missed or attributed to other ailments. In the meantime, unchecked inflammation can cause permanent damage.
Here are the symptoms that go unnoticed and potential treatments in the works.
How does lupus happen?Our immune system defends our body against infections and diseases by identifying and destroying harmful substances. But sometimes our immune system gets confused and accidentally attacks our own body. We call that autoimmunity — it can lead to inflammation.
The location of the autoimmune attack largely determines the type of autoimmune disease.
With lupus, you can have inflammation in the joints, under the skin and even in your organs, spurring a wide range of symptoms.
Lupus is sometimes called a cruel mystery since it can take many years for patients to be accurately diagnosed. A rash is one key clue. What causes lupus? We don't know the exact cause of lupus, but several factors can play a role.
We know there is a genetic predisposition to the disease and that autoimmune diseases can cluster in families but manifest in different ways. Someone in the family might have psoriasis while another person has thyroid disease and a third has lupus.
Family history is what we call the "first hit." There's often a second hit that actually turns on the disease and makes it occur in some people. For example, only about 40% of identical twins both have lupus.
It might be something environmental, like exposure to a virus. Sometimes it's exposure to sun and UV rays that activate the immune system and turn on this autoimmune process. We're still trying to unravel that mystery.
About 90% of lupus patients are women, but we're not sure why. There's probably some hormonal aspect. We do know that patients tend to flare around their period or after pregnancy, when hormones shift.
How is lupus diagnosed?There isn't a single test that proves somebody has lupus.
We often start with an antinuclear antibody (ANA) blood test that screens for autoimmune diseases.
Pretty much anyone with lupus is going to have a positive result, but a positive result doesn't confirm a lupus diagnosis.
Rheumatologists also look for protein or blood in the urine — which can indicate kidney problems, a common lupus complication — and evaluate symptoms.
What are lupus symptoms?Patients might have some symptoms of lupus but not meet the full criteria for diagnosis.
The most common one is pain from red, hot, swollen joints. There are also some typical lupus rashes.
The butterfly rash goes across the cheeks and the nose, while the discord rash is dark, circular and scaly. It can happen almost anywhere on the body.
The problem is that joint aches and pains can be chalked up to overuse or musculoskeletal injuries, and the butterfly rash can look very similar to rosacea, which causes flushing and redness in the face.
A lot of the symptoms are vaguer and may not even be part of the classification criteria for lupus, like fatigue, hair loss and Raynaud's syndrome, when fingers or toes change color in the cold. These symptoms can occur in patients who don't have lupus.
Having lupus shouldn't significantly lower life expectancy. But as patients live longer, we're becoming more aware that we need to pay attention to secondary issues like heart disease, which can be more common in lupus patients.
Dr. Amit Saxena said we don't know the exact cause of lupus, but several factors can play a role. How is lupus treated? There isn't a cure for lupus, but it has become an eminently treatable disease by managing the overactive immune system and reducing inflammation.
One medication used by nearly all our patients is hydroxychloroquine. It's relatively mild and without many side effects, though we watch for issues like long-term eye toxicity.
For many patients, hydroxychloroquine is not enough. We have to go stronger with immunosuppressive medications even as side effects include an increased risk for infections.
We are working on some really promising new therapies. Our research is exploring medications that target the abnormal parts of the immune system in lupus patients instead of blanket immunosuppressants that disable the entire immune system. Targeted therapies mean fewer side effects.
A couple of these medications have already been approved, and many more are in the pipeline.
Some small studies suggest that certain lupus patients can achieve remission and come off medications without experiencing clinical activity. This research is in its infancy but gives us hope that someday we can finally say we've been able to cure this disease.
How can flare-ups be prevented?Lupus affects the daily life of almost every patient. They can be having a normal day without any symptoms — and things can change on a dime. The risk of flare-ups can be reduced by:
Recurrent flares in lupus can lead to permanent organ damage and potentially kidney disease.
The good news is that a joint effort by patients, doctors and family members can help keep symptoms at bay and hopefully put the disease into remission so patients can live a full and long life.
Dr. Amit Saxena is an associate professor in NYU Langone Health's Division of Rheumatology. He is also the director of the Rheumatology Clinical Research Program.
Living With Chronic Pain Can Ruin A Person's Life. Here's What I Wish I'd Known About Managing It.
When news broke about the arrest of Luigi Mangione for allegedly killing UnitedHealthcare CEO Brian Thompson after Mangione's experience with pain from spondylolisthesis (slipped vertebrae) and his frustration with the health care system, I was able to identify with that frustration: losing the ability to do things and raging against a system that puts profits over people. Most people do not understand how pain can command a person's life.
I lived with pain my entire life and didn't even know it. According to the latest statistics from the Centers for Disease Control and Prevention (CDC), nearly 1 in 4 adults have chronic pain and nearly 1 in 12 adults have high-impact pain. The pain I have experienced in my life ranges from muscle tightness due to staying in a seated position for the majority of the day to nerve pain from sciatica and a spinal-fusion surgery I had when I was 14. No specialist I can recall seeing ever asked if I had discomfort or pain due to my neuromuscular disease, and I just assumed chronic pain was part of my disability, not something that in itself deserved attention. Since I was a child, the message I received was that pain is to be expected, and there's no point trying to find treatment since it will also get worse.
I wish that I had found community when I was a young adult, but I likely wouldn't have joined any available organizations or support groups. At the time I was filled with internalized ableism: a deep sense of shame and self-consciousness about being disabled. Even as a disability rights activist, it's only been in the last few years that I've slowly started to identify as someone with chronic pain and a member of this community.
When my nerve pain flares, my right leg is on pins and needles, causing my muscles to twitch and spasm. Even though that leg is usually entirely numb, there are periods of pain so severe it feels like sharp daggers are traveling from my foot up to my buttock, leaving me flushed with an elevated blood pressure. The pain comes in waves, every few minutes, with increasing intensity. Over-the-counter medications and distractions like watching TV do little to help. There were and are times when the misery feels relentless. Still, it took several years to find a doctor who believed in my pain, and who determined that opioids would be the most effective treatment for me.
My pain doctor and pulmonologist warned me about the adverse effects of opioids, such as developing a dependence on them, depressed breathing, and constipation. I accepted the risks and told them this was the only thing to bring temporary relief; however, I still wasn't prescribed opioids until I became a patient of a palliative care doctor who saw my pain and helped me manage the risks. I spent so much labor and time trying to find relief, which is also the case for millions of people in the US. Fortunately, I now have access to the medications I need, but even with treatment, pain does not magically go away.
Online communities have filled a void in my life, giving me a platform to share my story and a way to connect with people all over the world. Using social media has become my primary form of organizing and sharing information, which is also a form of advocacy.
Before X was X, I followed Kate Nicholson, a civil rights attorney and executive director of the National Pain Advocacy Center (NPAC), an alliance of scientists and clinicians, civil rights advocates, and people with lived pain experience. Nicholson founded NPAC in 2021 because of an unmet need: "There was no organization led by and for people living with pain that focused on education, advocacy, and systems change, and also pledged not to accept pharmaceutical or health industry funding," she explains. "I entered pain advocacy when I saw people who used opioids to manage pain being cut off in ways that, studies show, increase their risks of overdose and suicide and destabilize their health and lives."
Not only is pain difficult to diagnose and treat, significant disparities and inequities exist in the management of it. According to Nicholson, "Groups that report more severe pain and the worst pain outcomes are also more likely to experience provider bias and other barriers to care." She points to the latest CDC statistics, which, according to her, show that "women disproportionately experience chronic pain and high-impact chronic pain. Women also have more co-morbid conditions causing pain and yet are more likely to be disbelieved and under-treated."
Disparities by race and ethnicity, involving Black and Hispanic people in particular, are often rooted in medical racism. A 2016 study found that Black patients are systematically under-treated and disbelieved due to the false belief that black skin is "thicker" than white skin, resulting in lower pain scores and less accurate treatment recommendations. In some instances Black and Hispanic people have been shown to receive less medication or medication at lower doses.
These disparities are further compounded by sex, disability, and other factors. Emerging evidence indicates that artificial intelligence may encode the same racial biases in medicine that can perpetuate the under-assessment and under-treatment of Black patients. "Pain is a chief cause of disability globally and in the US, and people with disabilities experience heightened barriers to care," says Nicholson. "Studies show transgender people have more severe pain. There are also disparities in pain based on geography, education, and socioeconomic circumstances." She adds, "This is just the tip of the iceberg."
Research and treatment for chronic pain is at risk after the Trump administration's recent move to cancel public meetings, cease communications, and cap research costs at the National Institutes of Health. A judge temporarily halted the administration's plan to cut research funding after 22 states sued, citing that these changes would have a devastating impact on grantees, such as reductions in personnel and the capacity to make breakthroughs in science.
Some of my main concerns with the Trump administration and a Republican-controlled Congress are the repeal of Medicaid expansion under the Affordable Care Act, the promotion of work requirements, and additional spending cuts. Robert F. Kennedy Jr.'s confirmation as secretary of health and human services is also worrisome.
Nicholson had the same concerns, as she told Teen Vogue via email before RFK Jr. Was confirmed: "When the nominee pledges to fire 600 scientists, I'm concerned with who and what are on the chopping block. While I realize the cuts will face legal and political roadblocks, I worry about their impact on our work," she said. "Still, my job as an advocate is to look for the policy levers to press in any administration. RFK says he wants to address the chronic-illness epidemic in the US, and chronic pain is the most prevalent chronic illness. Our health care system is built mainly on an acute-care model, which, in itself, poses barriers to the treatment of chronic conditions like pain. We at NPAC will do our best to advance the rights of people with pain regardless of who is appointed."
People with chronic pain are already up against many difficulties in finding and receiving treatment. We are fighting to be believed in a hyper-capitalist society where health care is not a human right. Even with the immense uncertainty and fear that marginalized communities have about the future, advocates like Nicholson and organizations like NPAC are on the front lines of making sure all people are treated with dignity and respect.
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The $20,181 Cost Of Living With An Autoimmune Disease
Welcome to Show the Receipts, a series where we ask interesting people to share exactly how much it costs to get shit done. No matter the task, we're tracking every last dollar from start to finish. Up next: living with an autoimmune disease.
Most 25-year-olds don't expect to become bedridden in the middle of New York, but life had other plans for Ellen Rudolph. "I was experiencing a whole host of really strange, debilitating symptoms," she tells PS, recounting brain fog, joint pain, and debilitating fatigue that started in 2018. "I was having tremors, memory loss, all kinds of things that just weren't really normal for someone in their mid-20s."
With her quality of life suddenly flipped on its head, all Rudolph wanted was answers, but she soon discovered that those come at a price. She spent the next several months in and out of the ER, frequenting Urgent Care, and bouncing between specialists. Then, in 2020, Rudolph learned she had a positive anti-nuclear antibody (ANA) — a major sign of an autoimmune disease. The news felt validating, but her journey was far from over.
Diagnosis may offer important clarity and closure (especially where treatment is concerned), but it doesn't necessarily alleviate the physical, mental, and financial toll of an autoimmune condition. Because insurance typically only covers the bare minimum when it comes to treatment, people are often left financially vulnerable during their toughest moments.
For Rudolph, being diagnosed with an autoimmune disease meant she'd have to reclaim her health with the help of a functional medicine doctor, frequent labs, monthly acupuncture, and regular doctor's appointments. That's not to mention mental healthcare or preventative services like full-body MRIs, all of which cost a pretty penny. So, five years post-diagnosis, how much does Rudolph's autoimmune condition continue to cost her? Here's the full cost breakdown.
Task: Navigating an autoimmune conditionOccupation: CEO and co-founder of WellTheory, a platform for autoimmune careLocation: San Francisco, CATimeline: One year
The Receipts
In-network doctor visits: $510Testing: $1,578Concierge doctor visits: $2,500Quarterly labs: $5,632, not covered by insuranceSupplements: $5,782Procedures: $2,499Therapy: $240Monthly acupuncture: $1,440Miscellaneous: $1,680Total: $20,181
Price Breakdown
To explain exactly what she spends her money on, Rudolph broke down some of her services in greater detail:
Labs: "I do a lot of labs looking at different biomarkers," Rudolph says. This includes concierge lab services done with the help of her functional medicine doctor. "Again, that's entirely out of pocket." These concierge labs don't include the additional "specialty labs" she gets done every quarter. Those look for things like gut health status and hormones — "sort of a layer deeper than what you're able to get from the tests that are covered by insurance," Rudolph says.
Supplements: "Supplements are a big part of my routine as well," Rudolph says. "It was funny going through this; this is probably the most surprising — how much I spent there." She attributes this high cost to the therapeutic way in which her doctor uses supplements, giving personalized recommendations based on her labs.
Procedures: Popularized by celebrities like Kim Kardashian, the Prenuvo scan is essentially a full-body MRI. "For me that's more of a prevention thing that identifies different types of cancers," Rudolph says. "But [I'm] also wanting to make sure I don't have other things going on."
Therapy: Perhaps a less expected but equally important part of her autoimmune care is regular therapy. "It's very lonely to go through the diagnosis journey and have doctors tell you it's all in your head," Rudolph says. "There's some grief associated with your life changing."
Acupuncture: Rudolph says she works with an acupuncturist monthly. Acupuncture is thought to help with pain relief, digestive problems, anxiety, nausea, and more.
How I Did It
For Rudolph, health goes far beyond labs and doctor's appointments. Since being diagnosed with an autoimmune disease, her entire lifestyle has shifted to prioritize health and wellness, which also enables her to cut out some unnecessary spending. That said, she also wishes there was more systematic support to help with expensive treatments and important procedures. Here are her thoughts on everything from insurance to preventative scans, as someone five years in the game.
PS: What is the most expensive part of having an autoimmune condition?ER: "When I was going through the diagnostic journey, I was fortunate. I mean, I did wind up in the ER once or twice, but that was mostly covered by my insurance plan. For me, it's been much more about symptom management and maintenance, because a lot of these conditions don't have cures. It's something you're really managing over a lifetime. So, how do I stay in this state of remission and not backslide into a flare-up? There are a lot of expenses that go into that.
What surprises me most is that 90 percent of my costs were out of pocket. Only a fraction were covered by insurance. It speaks to the lifestyle approach that I've taken. The reality is that my lifestyle expenses span all the way from food delivery services I use that help me to stay on track with dietary goals — because a lot of what I use is food as medicine — to non-toxic cleaning and personal care products and cookware; the list goes on and on. I think this speaks to how trying to heal in this holistic way is a larger lifestyle shift that has a ripple effect across your whole life. In some ways it's hard to capture the true expense.
PS: How have you been able to save?ER: There have been a couple areas where I've pulled back my spending that are not related to my health. This is definitely the area that I invest in the most. Areas where I've cut back have been more around discretionary expenses — things like shopping for clothes, entertainment, and personal travel. I don't drink alcohol for health reasons. So things like not going out with friends and buying drinks, that's certainly helped. Those are some areas where I cut back and focused on saving in order to really invest in my health because I feel like my health is my wealth. My health journey also made me realize that some of these material things just don't matter quite as much.
PS: What's worth spending more on?ER: Some of the preventative things have given me peace of mind. We talked about the Prenuvo scan — yes, that is certainly an investment, but for me, knowing that my autoimmune disease hasn't progressed to the point of tissue degeneration gives me a lot of peace. And I think our healthcare system is so reactive. It's like only once you get sick do you actually seek out healthcare. I feel like a broken record saying this, but there's so much around diet and lifestyle that we can do proactively to prevent the onset of some of these chronic illnesses and diseases.
PS: What is something you wish more people knew about regarding the cost of an autoimmune condition?ER: Most people can't afford to invest as much as I am every year in my health. The challenge with the way that healthcare system is set up is these concierge doctors, they spend a lot more time with you than sort of your typical doctor. Your average PCP visits 15 minutes, so they're not really incentivized to actually accept insurance, which is a shame. So that's part of the paradigm that we're trying to change.
Final Thoughts
Although her health receipts are high, Rudolph says they're 100 percent worth it. "My health and wellness is my top priority because I know what it's like to be at rock bottom," she says, adding that it's something she's continued to prioritize and invest in. "It's definitely the top expense in my life."
She knows people can relate because following her diagnosis, Rudolph made a TikTok listing all the things she thought were normal, but were actually indicative of an autoimmune disease. By the morning, the video had garnered over 1.5 million views. "It became clear to me that there were so many other people out there just like me suffering from autoimmune disease and that I wasn't alone," she says. After reading all the comments sharing similar struggles and diagnostic journeys, Rudolph decided to launch her own autoimmune care company, WellTheory, in 2022.
"For me, a lot of the inspiration was wanting to create the experience I wish I had earlier on in my own health journey as a patient," she says. "Some of it was related to cost too, because I was able to really find answers with a functional medicine doctor who does not accept insurance, and I had to pay a lot of money out of pocket." To help make care more accessible, Rudolph now partners with insurance companies and employers so that WellTheory is available at zero cost to the end consumer. "My story, unfortunately, [is] not unique," Rudolph says. "If I can help someone not feel so alone on this journey, it will be worthwhile."
— Additional reporting by Mirel Zaman
Mirel Zaman is the former wellness director at PS. She has nearly 15 years of experience working in the health and wellness space, writing and editing articles about fitness, general health, mental health, relationships and sex, food and nutrition, astrology, spirituality, family and parenting, culture, and news.
Chandler Plante (she/her) is an assistant health and fitness editor for PS. She has over four years of professional journalism experience, previously working as an editorial assistant for People magazine and contributing to Ladygunn, Millie, and Bustle Digital Group.
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