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Lupus is a serious and debilitating disease that's not only hard to diagnose and difficult to live with, but a challenge to treat. Many of the debilitating and troublesome symptoms can't be seen — such as fatigue and joint pain — leaving those living with lupus feeling isolated and misunderstood.
The Lupus Foundation of America estimates that at least five million people worldwide are living with a form of lupus. Many celebrities, such as Paula Abdul, Lady Gaga and Selena Gomez, have been diagnosed with the condition and use their platform to educate fans about the disease.
"As many of you know, around a year ago I revealed that I have lupus, an illness that can affect people in different ways," Gomez told People in 2019. "I’ve discovered that anxiety, panic attacks and depression can be side effects of lupus, which can present their own challenges. It's an everyday struggle."
May is Lupus Awareness Month, which aims to generate awareness of the chronic disease amongst the general public and medical community. Like many other life-threatening conditions, it's important to know the early warning signs so that patients may begin battling it early on.
What is lupus?
Lupus is an autoimmune disease that occurs when your body's immune system attacks your own tissues and organs.
"Inflammation caused by lupus can affect many different body systems, including your joints, blood cells, lungs, heart, skin and kidneys," Sandra Evans, a retired rheumatologist specializing in lupus, tells Yahoo Canada. "It can be difficult to diagnose because its symptoms often mimic other conditions."
Although the cause of lupus remains unknown, Evans explains that genetics, epigenetics, infections, viruses, certain medications and environmental factors play a role.
"Further study will strengthen our understanding of the causes of lupus, which should lead to improved diagnosis, treatment and prevention," says Evans.
Who is at risk of lupus?
While anyone can get lupus, the condition mostly affects women between the ages of 15 and 44.
"Approximately nine out of 10 adults with the disease are women," Evans explains. "It’s also more common in women of Hispanic, Native American, Asian and African American descent than in Caucasian women."
Recent research suggests that people who have a family member with lupus or another autoimmune disease may be more at risk, but it's likely that a combination of factors trigger the condition.
What are the signs and symptoms of lupus?
No two cases of lupus are exactly alike, which makes the disease difficult to diagnose. Symptoms may develop slowly or come on suddenly, and may be or mild or severe.
"Most people living with lupus also have 'flares,' where symptoms get worse for a period of time, then improve or even disappear entirely," says Evans.
The most distinctive sign of lupus — a facial rash that resembles butterfly wings across both cheeks — occurs in many but not all cases. Other symptoms include join pain and stiffness, fever, fatigue, anxiety, shortness of breath, dry eyes, headaches, chest pain and skin lesions.
"No single test can diagnose lupus, and it could take months or even years to really be sure. But usually, blood and urine tests, a physical exam and skin biopsies are used to make a diagnosis," adds Evans.
If you or a loved one has symptoms of lupus, it's important to make an appointment to see a doctor.
How is lupus treated?
Treatment can depend on the severity of your symptoms. Once you're diagnosed, your physician will refer you to a rheumatologist who treats symptoms like joint pain and fatigue.
"Your rheumatologist will develop a personalized treatment plan that will help you prevent or treat flares, balance hormones, strengthen the immune system and reduce pain," says Evans. "You may also get referred to a dermatologist to treat skin issues or a nephrologist if your kidneys are affected."
If you have lupus, you'll likely have a range of feelings about your condition, from worry and fear to extreme frustration. The challenges of living with the disease can increase your risk of mental health problems such as stress, anxiety and low self-esteem.
To help cope, Evans suggests to connect with others who have lupus, gather support among friends and family, and make time for self-care.
How can I prevent lupus?
There is no single way to prevent lupus, but knowing what causes the disease can help you prevent certain symptoms.
"I would recommend limiting your time in direct sunlight, avoid overusing medications if possible, get enough sleep and develop stress management techniques," suggests Evans. "As with everyone, it's important to exercise regularly, drink lots of water, and eat a healthy diet to prevent viruses or infections that can lead to the development of lupus."