Its mark on the body is often invisible. Yet millions around the world suffer from it.
Its symptoms, such as fatigue, confusion, shortness of breath and joint pain, are so common that many of its victims, predominantly women, are written off by society as “lazy or crazy.”
Yet inflammation can easily flare, leading to lengthy hospitalizations, even death. What is this frustrating, covert disease that can take such a toll?
Lupus, also known as systemic lupus erythematosus or SLE.
“But you don’t look sick,” is the most common refrain that a person with lupus will hear, said Christine Miserandino, a lupus patient and chronic disease advocate who runs a website by the same name butyoudontlooksick.com. As she often points out in her writings and speaking engagements, that well-meaning phrase can backfire.
“Many times, being pretty or not sickly looking makes it harder to validate an illness you cannot see,” said Miserandino.
Lupus risks
Lupus is a chronic inflammatory condition where the body’s immune system attacks its own healthy cells and tissues. Any system or organ in the body can be affected — the skin, lungs, blood cells, heart, joints, brain or kidneys — so lupus looks different in everyone.
Because of that, it can be hard to get a diagnosis, as doctors confuse symptoms with other diseases, or discount them entirely.
Selena Gomez and other celebrities
Actor Kristen Johnston, best known for “3rd Rock from the Sun” told her fans on Facebook that it took 17 doctors and “two fun-filled weeks in November partying at the Mayo Clinic” before she was diagnosed in 2013 with lupus myelitis. That’s a rare form of the disease that attacks the spinal cord.
When pop star Selena Gomez took a break from one of her tours, she battled rumors of substance abuse before telling the media that she had lupus.
“I’ve been through chemotherapy. That’s what my break was really about. I could’ve had a stroke,” she told Billboard.
The willingness of other celebrities to speak out, such as Grammy award winning singer Toni Braxton, U.S. soccer team player Shannon Boxx, actor and television personality Nick Cannon, and singer-songwriter Seal, who wears the scars of discoid lupus erythematosus on his face, have helped the disease gain national attention and foster understanding of its many challenges.
Lupus causes
Lupus can attack at any age, but most commonly arrives between the ages of 15 and 44. Women, African Americans, Hispanics and Asians are more likely to be affected. There is no cure and no definitive cause.
There is a form of drug-induced lupus, caused by certain antibiotic, seizure or blood pressure medications, but it normally resolves after the drug is withdrawn. In most cases, experts believe there could be a genetic component to lupus, triggered at some point by an outside cause, such as infection, even sunlight.
Lupus symptoms
Joint pain
Inflammation
Unexplained fever
Headaches
Chronic fatigue
Sensitivity to sunlight
Confusion, memory loss
Butterfly rash
Shortness of breath
While each case of lupus is unique, there are some common symptoms. Nearly everyone with lupus will experience joint pain and inflammation, which can progress to arthritis. Chronic fatigue, unexplained fever, shortness of breath, headaches, hair loss, mouth sores and sensitivity to sunlight are typical.
A facial rash that extends across the forehead, cheeks and nose, and shaped similar to a butterfly, occurs in about half of all cases.
One of the most frustrating symptoms of lupus is frequent confusion and memory loss. Around one in five people with lupus suffer from some sort of brain fog, which happens when lupus antibodies cross the blood-brain barrier and interfere with the brain’s memory center. Most attacks are mild, such as forgetting a familiar number or where you parked your car, but for some memory loss can worsen over time.
A “butterfly rash” on the face occurs in about half of cases.
Lupus also raises the risk of pregnancy complications, infections, even cancer, so obtaining treatment for the condition is critical to living with the disease.
Lupus treatment
Typical treatments for lupus include an immunosuppressant to slow the body’s attack on itself, prednisone and other types of corticosteroids to reduce inflammation, and over the counter pain relievers, such as naproxen sodium and ibuprofen to treat fever and swelling.
The first prescription treatment for lupus in over 50 years was approved in 2011 by the Food and Drug Administration. The drug, Benlysta, is a biologic, which means it was made in a living organism rather than chemically, and works by specifically targeting overactive antibodies, rather than suppressing the entire immune system. It’s given intravenously, and only to those patients for whom other treatments have become ineffective.
There is some evidence that vitamin D, fish oil and DHEA (dehydroepiandrosterone) supplements can help as well. Because sunlight is a trigger, it’s important that anyone with lupus wear protective clothing, sunglasses and sunscreen.
Lupus triggers
Lupus is a variable disease, characterized by periods of wellness with few symptoms, followed by an extreme “flare” of the disease, often triggered by a factor in the patient’s environment. Common triggers include stress, cold, flu and infections, exhaustion, ultraviolet rays from sunlight and in some cases, florescent lights, and various medications, especially those that increase sun sensitivity.
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Experts suggest avoiding flares by practicing a healthy lifestyle: eat a well-balanced diet, get plenty of sleep and exercise, and avoid as much daily stress as possible. Staying out of sunlight is also key, as is keeping a journal of symptoms to help identify flares early and get immediate medical care.
It’s an autoimmune disease where the body’s immune system becomes hyperactive and attacks healthy tissue. It can cause damage to many parts of body such as joints, skin, kidneys, heart, lungs, blood vessels and the brain. Lupus is one of the most complicated and cruelest autoimmune diseases. Simply put: It’s difficult to diagnose, hard to live with and challenging to treat.
If I could write a letter to lupus, I would say “I want me back, I’ve had enough.”
As a junior at Kent State University, I felt like I was on top of the world. I went to a great school, I was doing exactly what I love (journalism), and then on September 11, 2001, I began to get unexplained illnesses one after another.
Eventually, I landed in a hospital bed with an IV pumping a cocktail of drugs meant to cure “a series of infections” ravaging my body. When I finally felt reasonable enough to go to class, I couldn’t remember things. My essays, as one professor told me, suddenly “read like ramblings.” I wasn’t me.
In April of 2014 Lauren Lee spent time in the hospital getting infusions to help deal with a flare up of Lupus. A flare is a period of heightened disease activity.
That semester, I ended up taking incompletes in all of my classes. My doctors and professors declared I was overwhelmed with catching up in my classes and the anxiety of it all consumed me. Little did I know that it would be a decade later before I would officially find out it was really systemic lupus erythematosus.
My diagnosis came as I was entering what I considered the magical part of my life. I had married, had a beautiful daughter and was working my dream job (CNN) and finally felt like I was walking in my purpose.
Abnormal levels of waste can build up in the blood, and edema is often the first sign of lupus nephritis.
I began to have horrific migraines, excruciating nerve pain down my left arm, and bruises and rashes started to appear more and more often. Initially, I thought I was just tired and it was the allergies and the bruises. I simply attributed it to being anemic.
This was until my esophagus began to feel as if it was closing up. I went to a physician, and he said I had a tumor on the shoulder and that must be causing everything I was feeling.
When I went to the surgical oncologist, she said “it’s not cancer” and referred me to an amazing internist.
I had already gone through the gamut of diagnoses: leukemia, thoracic outlet syndrome, sarcoidosis. I was completely over the diagnosis portion of the process. My life had become work, bed and repeat. They ran multiple tests. I remember the appointment like it was yesterday.
When I came back in for my follow-up, I was told I had lupus. A disease that has no cure. To me, that diagnosis was not a death sentence, but a sentence to feel the way that I felt at the moment for the rest of my life. I felt pain, I felt exhausted and I was not me.
Having lupus has been like having a horrific hangover while doing two-a-day workouts — #exhausting.
No one knows what is wrong unless you tell them. There is no escaping the pain, and the only way out is to sleep or die. I’ve felt like lupus at times has sucked the life out of me. It’s shifted my priorities, taken away many of the things I love because I’m stuck in a holding pattern just treating the symptoms. Never being cured.
Fighting this disease has been no easy ride.
The disease has affected my brain, GI system, lungs and heart. I take twelve medications to get through the day.
Those drugs include chemotherapy, an antimalarial, a beta-blocker, an anticonvulsant, chemotherapy and a monthly infusion of a biological drug. Only one of these drugs is specifically meant to treat lupus.
When people see me, they always say, “You don’t look sick.”
This has sort of been a gift and a curse for me. On one hand, I didn’t want people to look at me as if I had a disability. On the other, I wanted people to know what I’ve been able to accomplish in spite of the disease. It’s an invisible fight for me, but now is my time to make some noise so we can find a cure. If no one is aware of my struggle, we can’t get there.
I want me back, and I’ve realized that every breath I take is blessed with a responsibility. A responsibility to raise awareness about life with lupus and the need for a cure. Every day, this is what keeps me going.
Lupus is one of America’s least recognized major diseases, although 1.5 million Americans are living with it.
Research is not keeping pace with the research for other diseases of similar scope and devastation. A study conducted by the Lupus Foundation of America found 72% of Americans from 18 to 34 (those most at risk for lupus) have either not heard about lupus or know nothing more than the name.
In the past century, only one drug has been developed and approved to treat the disease. With the ebbs and flows of the economy, this disease has taken the backseat to research investment priorities.
The Lupus Foundation of America is the oldest and largest nonprofit organization focused on improving quality of life and finding a cure for lupus. To find out more information about the disease or to make a contribution, head over to lupus.org.
