About 2 million people live with lupus here in the United States, and while it’s a disease that most people have heard of, it’s also one they don’t know much about. There’s a sense that people with it have to hide—probably related to the fact that sunlight can be a trigger for symptoms. Many understand that it’s serious, without really knowing why.
It was hard even for Gomez, who is accustomed to living in the public eye, to talk about it.
“I don’t think I made the right decisions, because I didn’t accept it. It was extremely selfish and at the same time really, really just unnecessary,” she said. “I’m not really proud of that…I waited for the right time to talk about it because I am in a great place, and I’m very healthy. I’m not trying to be loud about it: It was time to use my platform to help.”
Who’s at risk
Women between the ages of 16 and 55 of Asian, African American, Caribbean and Hispanic origin—like Gomez—are at the highest risk for lupus. Although men can have the disease, some estimates say it’s about nine times more common in women. Many probably also don’t realize that about 20 percent of lupus cases happen in children younger than 16.
“We don’t know what the cause is,” said Dr. Walter Moore, a rheumatologist with Augusta University Health, “but we do know that women in their childbearing years do have an increased risk for the developing the disease, which reflects the role of estrogen.”
With lupus, the disease essentially tells your body’s self-defense system—the autoimmune system—to go on the attack. But the target isn’t bacteria or other germs. It’s the body’s own healthy tissues, everything from your joints, skin and blood cells to your kidneys, brain, heart and lungs.
As a result, people with lupus can experience a wide range of symptoms, including:
- Extreme fatigue
- Joint pain, stiffness or swelling
- Chest pain
- Shortness of breath
- Headaches, confusion or memory loss
- Skin lesions, including the disease’s signature butterfly-shaped rash, which spreads across the cheeks and over the nose
You can’t “catch” lupus—it’s believed that those who have it are predisposed to it, often due to family history. The disease usually kicks off after some event triggers it. For some, it’s sunlight, something as simple as a long weekend at the beach. For others, the trigger is an infection, certain medications such as antibiotics or those for blood pressure or seizures, highly stressful or emotional events such as surgery, or life-changing events such as pregnancy or miscarriage.
Hard to diagnose, harder to accept
The catch-22—because the symptoms are so vague, it can be hard to diagnose. But early diagnosis can help limit symptoms and possibly prevent serious complications affecting the kidneys; heart, blood and lungs; and nervous system.
For someone experiencing lupus symptoms, the best advice is not to wait but to go ahead and talk to a doctor, said Moore, especially if you have a family history of the disease.
Your physician can talk to you about what’s going on and compare your symptoms and test results to the 11 criteria for a clinical diagnosis of lupus. “It’s like putting a puzzle together,” Moore said. “When you do a puzzle, you start with the four corners. For us, we look for four of the 11 criteria currently defined by the American College of Rheumatology.”
If you have been diagnosed, expect to feel a wide range of emotions. It’s something Gomez experienced. “It wasn’t something I wanted to accept,” she said, pushing herself to perform and put on a happy face, despite crushing fatigue, fevers and other symptoms. When her doctors told her she needed a kidney transplant and one of her best friends stepped up and offered hers, it changed her life, in more ways than one.
“I don’t want people think it’s a sad thing that I went through this,” she said. “At the end of the day, I think that all of the stuff I went through made me and defined who I am now. It’s a really beautiful thing and I have to remind myself, it’s not a negative experience.”