The Ups and Downs of Lupus
The autoimmune disease affects more than 5 million people
In 2015, singer and actress Selena Gomez revealed to the world that she underwent a kidney transplant as a result of lupus. She eventually took a break from her career to deal with her health issues that resulted in anxiety and depression.
“I’ve discovered that anxiety, panic attacks and depression can be side effects of lupus, which can present their own challenges,” Gomez told People in 2019. “It’s an everyday struggle."
Living with lupus can be frustrating for a number of reasons. It’s often difficult to diagnose because its symptoms can mirror those of other diseases, and no two cases are alike. Symptoms may appear suddenly or develop slowly, can be mild or severe, and temporary or permanent. And there is no cure for lupus.
“It’s a type of autoimmune disease that will manifest in any part of your body – from your brain down to your toe, and it can affect the skin," says Dr. Syed Zaidi, a family practice physician for OSF HealthCare. "Basically it’s where your body’s immune system is attacking itself in various parts. Sometimes it can involve the kidneys and the skin and blood vessels.”
There is no known cause for lupus, but experts suspect genetic and environmental triggers may be factors. According to the Lupus Foundation of America, there are approximately 1.5 million Americans, and at least 5 million people in the world, living with some form of lupus. Paula Abdul and Lady Gaga are two other celebrities who have also shared their stories publicly. Nearly 90% of all cases are women, but men and children are also impacted by the disease. About 16,000 new cases are diagnosed each year, mostly in people between the ages of 15-44.
“Men, in terms of their hormonal states, may indicate whether they're going to be highly susceptible or even manifest lupus," says Dr. Zaidi. "So if we can test them, and they might be positive, but they may never manifest it either. So it may be a discrepancy between incidence and prevalence of the disease. Definitely, I know men out there who have it.”
Lupus mainly affects skin, joints and internal organs such as the heart and kidneys. But since it affects so many parts of the body, it can cause a number of symptoms, including headaches, seizures, dry eyes, mouth sores and more.
“In a way it’s a type of Russian roulette in that you don't know where it's going to land," says Dr. Zaidi. "So we really focus the workup on the generalized symptoms – the fatigue, the rash, the body aches – that we can't explain due to anything else. Your doctor will likely want to do a workup that includes what we call an autoimmune workup. And that’s when some more doors might open to this possibility being lupus or its variant.”
Since lupus is a chronic condition that will need to be treated regularly, the goal is to get your symptoms under control and limit the amount of damage the disease does to your organs. No two treatment plans are the same. Some people will need limited treatment, while others will require something more aggressive. There are a range of medications used to manage lupus including steroids, hydroxychloroquine and methotrexate.
Dr. Zaidi recommends staying away from triggers, which could be tobacco use or coffee, and to make sure to get plenty of rest. To avoid symptom flare-ups, other helpful tips include avoiding sun exposure, doing low-impact exercises that can help with joint and muscle pain, watching your diet and finding ways to reduce any stress in your life.
For people living with lupus there are going to be good and bad days. There are going to be times when you feel fatigued and lethargic and not feeling up to doing anything. There’s also a toll on an individual’s mental health when their quality of life is compromised. Dr. Zaidi says the key is taking care of yourself and knowing when not to push too hard to get through the day.
“I can't specifically say to one day or one disease to another that lupus is going be a little different for you," says Dr. Zaidi. "All chronic diseases are going to be different. So really, it's going to come down to how you are going to wake up, what you plan on doing throughout the day, what your mindset is and whether you’re adhering to your doctor's recommendations for your treatment.”
For more information on lupus, visit OSF HealthCare.