It was a word six years in the making — two vowels sandwiched between three consonants, bearing six years of frustration and complications to last a lifetime. The word is lupus, a relatively simple word for something increasingly complex for myself and 1.5 million other Americans diagnosed with the autoimmune disease.
Lupus, like other autoimmune diseases, is the result of the body fighting itself. Cells misbehave and attack healthy tissue causing a painful inflammation response.
My diagnosis came after six years, ten medical specialists in three cities, dozens of emergency room visits and hundreds of medications. More aggressive testing through Upstate’s rheumatology department brought me an answer — finally, an answer — after years of being sick. Some diagnoses come sooner, some take longer. No two diagnoses are the same, just as no two lupus patients are the same.
Dr. Andras Perl, chief of rheumatology at Upstate Medical University, says the criteria for diagnosing someone with lupus can be a roadblock to care for the disease. In order to be diagnosed, a certain amount of criterion must be present. Lupus is a disease of flares, with symptoms waxing and waning, provoked by triggers such as the sun, stress or lack of sleep. Flares can last a day, a week, a month or even years, requiring additional medications, infusions and hospital treatment. Symptoms can be present in whole one day, and gone the next, making the overall lupus story a difficult one to tell.
“Sometimes patients don’t provide the whole story,” Perl said. “Sometimes doctors don’t seek the whole story. Part of the difficulty is someone not making an effort. They must be adamant about crossing all the t’s and dotting all the i’s.”
Lupus is one in a class of “invisible diseases,” because patients often don’t “look sick.” Symptoms can be muskoskeletal, can involve organs, like the kidneys and lungs, and can affect the brain and cognitive systems. Different treatments will come into play depending on how involved the lupus is — ranging from anti-malarials and vitamin D, to frequent infusions and even chemotherapy.
“The prognosis of lupus is highly variable,” Perl said. “It’s something that has to be monitored for a lifetime. With the research done in the last few years, the prognosis has greatly improved, but the course [lupus] follows, it’s very hard to predict.”
That’s why awareness of the disease is key. Awareness of the disease will be brought to the forefront at the sixth annual “Walk Along for Lupus,” at Destiny USA, as sponsored by the Lupus Alliance of Upstate New York.
“More awareness makes it easier for people to understand what the person with lupus is dealing with — the fact that it is chronic, can be life threatening and certainly life altering for many,” said Honi Kurzeja, executive director of the Lupus Alliance of Upstate New York. “[Awareness] also promotes earlier diagnosis for those who can recognize early symptoms and perhaps discuss this with their physicians.”
If one more person knows the signs and symptoms of lupus, maybe it can cut diagnosis time in half for the next patient. While lupus is incurable, a quicker diagnosis could be the key to quicker course of action to manage the day-to-day lupus involvement.
I will join Kurzeja and others at the sixth annual “Walk Along for Lupus” at Destiny USA, a walk hosted by the Lupus Alliance.
“[The walk] brings together those who are affected by lupus — patients, caregivers, family, friends, co-workers — and allows them to meet others who are dealing with the same problems,” Kurzeja said.
The walk will be held at 9:30 a.m. March 17 at Destiny USA, nearest the food court and Carousel. Those interested in registering, donating or learning more about the walk can visit firstgiving.com/lupusupstate/6th-annual-walk-along-for-lupussyracuse.
Amanda Seef is a former editor/reporter for Eagle Newspapers. She is currently employed as an assignment editor at YNN.
