Jessica Costeines came home from her honeymoon feeling exhausted, feverish, and ill. “I thought I had the flu,” she says, and went to the emergency room. Three days later, all the while feeling so sick she could not move from her hospital bed, she was given a surprising diagnosis: not flu, but lupus.
Lupus is a chronic autoimmune disease in which the body’s immune system attacks its own tissues and organs. Inflammation from lupus can affect many areas of the body, including the joints, skin, blood cells, kidneys, heart, and lungs. People with lupus, who are mostly women, suffer from a variety of symptoms, which are unpredictable and can become debilitating, including a rash, fever, malaise, joint and muscle pain, and fatigue. According to the Lupus Foundation of America, more than five million people have some form of the disease worldwide.
It often takes physicians months or years to diagnosis lupus, as there is no definitive test for the disease. The symptoms are similar to those of many other diseases, and the causes are little understood. There is no cure for lupus, and treatment entails controlling flare-ups of this lifelong chronic disease.
After diagnosis, Jessica began medication to manage her lupus, which included high doses of steroids. “A big complaint from people with lupus is that steroids can give you more problems in the end.” For instance, in the middle of working hard on exams for her Ph.D. degree, a lupus flare-up attacked her lungs and she suddenly had trouble breathing and speaking. At the same time, the steroids she was given were causing serious bone pain in her knees. “I had to either increase or decrease the steroids to be able to either breathe or walk,” she says. “My doctor said, ‘You have to pick one.’ And I said, ‘Well, I guess breathing wins today’, so I couldn’t walk without being in extreme pain for a couple of weeks.”
Feeling frustrated with the lack of available information about both lupus diagnosis and treatment, and working in the research field herself at Yale School of Medicine, Jessica decide to join a lupus-related study at Yale. The study, led by Martin Kriegel, M.D., Ph.D., seeks to understand the role that the gut microbiota, or the trillions of microorganisms that inhabit the gastrointestinal tract play in autoimmune diseases like lupus.
Though participation in Kriegel’s study has ended, “I’m looking for other studies all the time. Research is so important.” says Jessica. In the meantime, she is reaching out to other people who suffer from lupus to share experiences and knowledge about the disease. “I realized I had never met anyone in real life with lupus,” she says. She recently began a virtual lupus support group, which has, to date, fifteen women from across the country, who will meet over Skype for discussions that Jessica will facilitate.
“The important thing about lupus is that no two stories are the same,” Jessica says. “So people that are making their stories heard, or telling a doctor what has happened to them, eventually, with enough data, we will be able to make these connections and start to be able to put things together. Although some days are more difficult than others for me, I feel grateful for this life, and hopeful that research will find a cure.”