Despite debilitating disease, local mom calls herself lupus thriver

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.”

I chatted with her by email to learn more about her experience with lupus. Here's our email chat: 

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.

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!”

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 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.

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. 

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.