Photo Credit: Lupus Foundation of America
Shortly after my daughter, Heather, started high school, she began having trouble getting out of bed in the morning. When this first started happening I thought maybe she was staying up too late, or maybe she just didn’t like school. Then more obvious symptoms started showing up that made us think something was wrong: low-grade temperatures, swollen glands, sore joints and constant urinary tract infections. Her fatigue and exhaustion worsened so that she was sometimes unable to even eat or take a shower.
We made many trips to the pediatrician and heard many potential explanations; from “It’s just growing pains” to “It’s just a virus” and even “Mom, you worry too much.” Finally one doctor really listened and initiated a series of tests that gave us answers. Heather was diagnosed with Systemic Lupus just five days before her 18th birthday.
Lupus was not something we were prepared for. There is no cure – words no one, especially a child, should ever have to hear. We were both frightened and yet relieved at the same time. At least we finally knew what we were dealing with. Lupus did not run in our family, nor did we know anyone who had lupus, so we had to educate ourselves.
We learned that more than 90 percent of people with lupus are women between the ages of 15 and 45. African‑American, Latina, Asian and Native American women are at greater risk of getting lupus than white women.
There are several types of lupus. Most often lupus refers to systemic lupus erythematosus (SLE) which is an autoimmune disease that attacks the organs and systems of the body, such as the kidneys, heart, nervous system and vascular system. Other types of lupus include discoid, drug-induced and neonatal.
Like the unwelcome visitor that it is, lupus can come and go at its own leisure – its “visits” are referred to as flares. According to the American College of Rheumatology, “Lupus flares can vary from mild to serious. Most patients have times when the disease is active, followed by times when the disease is goes into remission. Flares bring on a variety of symptoms, including “fatigue, rashes, arthritis (painful and swollen joints) and fever.”
We created a plan for the best way to manage my daughter’s health. She has a team of doctors in order to treat the numerous symptoms of lupus. Like most lupus patients she sees a rheumatologist regularly. When Lupus affects organs or systems of the body, other specialists are consulted. At any given time these may include: a nephrologist for her kidneys, a neurologist, a cardiologist and an ophthalmologist. In addition, prescription medications help to manage her symptoms and suppress her overactive immune system.
Consistently maintaining this plan can be challenging – seeing doctors regularly, eating healthy foods, exercising and taking prescribed medications. When she was first diagnosed, my daughter had trouble eating due to her flares and side effects from the medication. She resented having to take daily medication, and was too tired to even think about exercising. We had to take one step at a time and eventually she was able to find a regimen that worked for her.
Having the support of medical professionals, family and friends has been a key component of her maintenance regimen. We are fortunate. Our family and friends have been very caring and understanding. They have taken the time to ask questions, and to educate themselves about lupus so that they can relate to what my daughter is experiencing. We have found support networks on-line, and for a while we even attended a local support group. It was important for my daughter to see other “lupies,” and to be able to talk to people that truly understood what she was experiencing.
We have learned that having hope makes us stronger. Hope for a cure. Hope for a “good day.” Hope in helping another “lupie.” We have also learned the power of community. Each May during Lupus Awareness Month, we participate in a fundraising walk to raise money for research. It is also an excellent opportunity to see friends, family members and co-workers coming out to provide support.
Please take a few minutes today to learn more about this disease and those living with it. Help us find a cure.
Lupus Foundation of America: Lupus.org
Alliance for Lupus Research: Lupusresearch.org
Us in Lupus: Usinlupus.org