Despite debilitating disease, local mom calls herself lupus thriver
Posted April 13, 2014
Updated April 17, 2014
Jeanette Burns' diagnosis with lupus years ago changed her life exponentially.
But, instead of dwelling on the bad, Burns focuses on the good. She calls herself a lupus thriver and is working hard to spread awareness and raise money for research for the chronic disease.
About 90 percent of people diagnosed with lupus are like Burns when she got the news - women in their childbearing years. And Burns, a single mom of a 15-year-old girl in Cary, likes to clear up some common misconceptions. Lupus isn't contagious. It isn't like or related to cancer, HIV or AIDS. And it's not arthritis.
Lupus patients are like snowflakes, no two are alike, said Burns, quoting a common description.
"Generally, no two people with lupus will have identical symptoms – there is no 'typical' case of lupus. That’s why it’s so hard to diagnose and difficult to treat," she said. "Lupus mimics other illnesses like multiple sclerosis, fibromyalgia, thyroid disease, infections, rheumatoid arthritis and a host of other conditions.”
To raise awareness and money, Burns is participating in the Walk to End Lupus Now in Raleigh on April 27. The event, with a 5K and one-mile route, takes place at N.C. State's Centennial Campus, 851 Main Campus Dr.
I chatted with her by email to learn more about her experience with lupus. Here's our email chat:
Go Ask Mom: When were you diagnosed with lupus? What symptoms led to the diagnosis?
Jeanette Burns: From the outside you’d never guess the battles I have won or the ones I am fighting today. I have lupus, systemic lupus erythmatosus (SLE), ITP (a low platelet blood disorder since birth), Raynaud's and Sjogren’s Syndrome, liver disease (Stage 2, NASH), fibromyalgia, a hemangeomia of the skull that causes severe migraines and AVN (avacular necrosis of the hips, it is the death of bone tissue due to a lack of blood supply. Avascular necrosis leads to tiny breaks in the bone and the bone's eventual collapses, I developed this condition after long use of prednisone to treat my lupus) and anxiety. Many of these syndromes are a result of having my lupus.
I became sick in 1998 after having my daughter, while living in Pennsylvania. The first flare I recall I had extreme fatigue, numerous skin, hair, and nose infections, extreme body pain, low platelets and hair loss. My doctor recognized right away what he suspected to be lupus and ordered the appropriate tests. I always had prolonged and frequent infections and viruses since I was young. Looking back at pictures, I now notice the lovely butterfly rash blanketing my face. I found out later that lupus was in my family. But I still didn’t take it serious back then because there wasn’t much information out there on what it can really do to my body from my area. I thought it was only skin related.
In 2008 I got a shock when I learned what lupus really can do. It affected my heart. I thought I had heartburn for months until I ended up in Duke Hospital with a large pericardial infusion around my heart and developed a condition called pericarditis. This began an emotional roller coaster ride of symptoms that continues till this day. Symptoms including recurring infections, joint pains, chest pain, headaches, persistent fevers, fatigue, depression, rashes, hips throbbing, insomnia, weight fluctuations, and memory fog. Since 2008, I’ve seen many doctors and tried many different medications to get my lupus under control and I have been battling other conditions that the doctors have found since then.
GAM: How has the diagnosis changed your life?
JB: Lupus has changed my life in many ways. I’m no longer a partner at my printing company or an owner of a limousine company. I’m not a Brownie leader or running from one church meeting to the next. I don’t work anymore and my life is now dedicated to my daughter, exercise and being a lupus activist. I now know what my calling is: To educate people about lupus and to make more people aware of what it is and how it changes lives forever.
However I’m blessed today, I’m thriving with it. I have team of great doctors at Duke: A rheumatologist, neurologist, hepatologist, urologist, and pain management specialist. And today, I’m on the right combination of medication, but my cabinet looks like a small pharmacy. Sometimes it’s still heartbreaking to have to say, “No I can’t do that today.” It’s a struggle to find the balance of pushing yourself to your full potential and allowing yourself to rest. I don’t like to admit that some days I can’t walk or be in the sun, or I’m weaker than people think.
So, in 2011, I started volunteering with the North Carolina chapter of the Lupus Foundation of America. My knowledge of lupus has increased. I have been in the health sector for the large part of my life and lupus was not really on my radar even though I had it. I didn’t realize what a mystery this disease in fact was until I started working with the organization. I am a firm believer that health care is a right not a privilege. It became readily apparent what an impact this group of people makes in the lives of individuals affected by Lupus living in North Carolina. Our chapter has programs that support and resources to anyone affected by lupus in North Carolina at no cost to the individual. A number of the people who seek our help are newly diagnosed, scared, and looking for answers and help.
Upon becoming part of this chapter, we started a support group in Raleigh, which is now called the Wake County Lupus Support Group that I facilitate. It helps me to know I’m not the only one out there. As of today, we are growing every day. Our support group is open to lupus patients, lupus thrivers, family, friends, co-workers; etc
Our meetings range from planned topics to getting down to the heart and soul of the physical, mental, and emotional pain we all live and cope with on a day-to-day basis. All I know is that God is working through me to impact lives and if he is pleased with my works while I am here on earth, then I know he'll be able to say, “Well done good and faithful servant!!!!” My favorite quote by Maya Angelo is: “I can be changed by what happens to me, but I refuse to be reduced by it!”
GAM: About 90 percent of people with lupus are women in the prime of their lives. What does the general public need to know about this disease?
JB: Lupus is an overactive immune system gone awry...an overachiever. Instead of destroying bacteria’s, viruses and foreign invaders like it is supposed to do, it gets confused and over-zealous and destroys anything in its path, including vital organs.
Think of it in terms of "friendly fire," when one of your own gets taken out accidentally. That is what the immune system does to your body and vital organs. It doesn’t intend to. It just didn’t recognize them as supposed to be being there.
Lupus is a chronic disease. This means that anyone who develops Lupus will have lupus for the rest of his or her life. As with other chronic illnesses such as diabetes or asthma, there is no cure for Lupus yet. However, there are medications and lifestyle adjustments that help most people live active and productive lives in spite of these illnesses.
Lupus has many different symptoms, and because of that, affects each person differently. Lupus can cause a mild skin rash or achy joints, or can involve the kidneys, heart, lungs, brain, or other internal organs. What most people do not realize, however, is how much effort it may take you to function day-to-day when you have to cope with extreme fatigue, chronic pain, memory loss, medication side effects, or visible skin lesions.
Lupus is unpredictable because it is a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). Knowing that Lupus is unpredictable may help other people understand your physical and emotional ups and downs as well as the changes that you may have to make to schedules, plans, and commitments.
Ninety percent of lupus patients are female. It strikes mostly women of childbearing age - ages 15 to 44. However, men, children and teenagers develop lupus, too. Lupus affects more women of color (African American, Asian Americans/Pacific Islanders, Hispanics/Latinos and Native Americans) than Caucasians. These racial/ethnic groups are two to three times more likely to develop lupus than Caucasians. Relatives of people with lupus have an approximately 5 percent to 13 percent chance of developing lupus.
GAM: What are your treatments like?
JB: There is no cure for lupus yet. For most people with lupus, proper treatment can minimize symptoms, reduce inflammation and pain and stop the development of serious organ damage. Once you have been diagnosed with lupus, your doctor will develop a treatment plan based on age, lupus symptoms, general health, and lifestyle. However, it can take months, and sometimes years, before your health care team finds the right combination of medicines to keep your lupus symptoms under control.
GAM: You will be participating in an awareness walk this month. Why is important to raise awareness?
JB: Being a lupus thriver, I put my heart and soul into is our Lupus Walk every spring. I have been on the planning committee since 2012. It’s so rewarding to me.
One of the greatest things about the walk is this day we support the fighters, admire the survivors, honor the taken, and never ever give up hope there might be a cure one day for us. There’s a whole community there that day who understands how you feel and what you’re going through. And I promise you, when you leave that day you will know that you’re not alone in this battle. It’s an amazing and emotional experience.
The walks are conducted nationwide by the Lupus Foundation of America and its national network to raise money for lupus research, increase awareness of lupus, and rally public support for those who suffer from its brutal impact. Those interested in participating can register as an individual or with a team. There is a 1-mile route and a 5K route option.
For more information about the walk, go to www.lupusnc.org or contact the LFANC at 877-849-8271 or firstname.lastname@example.org. If you live or have families in other areas, walks are scheduled May 17 in Asheville; May 4 in Charlotte; and Sept. 13 in Fayetteville.
Also, May is Lupus Awareness Month. Please wear your purple for us and tell someone what you learned today and help spread the word about lupus so more people will be better prepared to recognize and fight it.
Go Ask Mom features local moms every Monday.