My Sister, My Shero: Living with Lupus and Thriving

In 1992, in the fictional town of Llanview, Marty Saybrooke was hospitalized with lupus. Shortly thereafter, Megan Gordon Harrison, daughter of Victoria Lord Buchanan, died from complications stemming from the disease.

Before becoming engrossed in the lives of these characters on “One Life to Live,” I had never heard of lupus. Like most things on the soap operas, I thought it was make-believe.

But according to Alliance for Lupus Research, the number of people with lupus in the United States has been estimated to be as many as 1.5 million. The actual number may be higher.

Lupus is a chronic autoimmune disease that can affect the joints and almost every major organ in the body, including the heart, kidneys, skin, lungs, and brain. Lupus can range from mild to life threatening. Nine out of ten people who have lupus are women, and the disease usually strikes during the childbearing years. Lupus is three times more common in African-American women than in Caucasian women, and is also more prevalent in women of Latino, Asian, and Native American descent.

Before her diagnosis in August of 2003, my youngest sister knew nothing about lupus either. Even after she was diagnosed, she refused to research it. She had convinced herself that the less she knew about the disease, the less it could hurt her. After a few months, she realized it was a dangerous way of thinking and began educating herself as much as possible.

Each person with lupus has slightly different symptoms — that can range from mild to severe, and may come and go over time. My sister noticed swollen joints, particularly swollen ankles. She had always been very athletic — so when she started experiencing increased fatigue, she attributed it to doing too much. One of her scariest moments came on the night when she almost died. She was rushed to the hospital for severe chest pains and was unable to breathe. “It was the worst pain that I have ever felt,” she says.

It was discovered that she was experiencing a pulmonary embolism. Doctors found four blood clots in her lungs. When I asked her what got her through, she boldly states, “My faith!” Knowing that she could have died but didn’t, was her confirmation that God had more plans for her life. She felt empowered and thought that it was time to “put my game face on and fight.” Once she changed her perspective for the better, her disease wasn’t as crippling.

While it is certainly possible for women with lupus to have children, when my sister became pregnant with her first child, I was worried (I didn’t tell her though). I knew enough about the disease to know that pregnancy may not be easy. Most — if not all -lupus pregnancies are considered high-risk.

In December of 2007, she gave birth to a healthy baby boy, Immanuel. She and her husband are about to welcome their second child. When asked what advice she would give to others struggling with the disease, she replied, “Try to see past all the pain and struggles that come along with this disease, dig deep and find the good. I believe once you can change your perspective to focusing on your blessings instead of your limitations, your quality of life can improve tremendously and in a very strange way, you start to understand your purpose of living with lupus. In my case, I know that I have lupus for a reason…and more and more I see that it has made me stronger and allowed me to be a positive blessing to so many other people affected by this disease. If this is why I was put on this earth, then I accept it, knowing that God is in control of my destiny!”

My sister has become an ambassador for the Us in Lupus campaign, a woman of strong faith, a wife, a mom, an entrepreneur — and my shero!

May is Lupus Awareness Month. On behalf of my sister, Persha, and others living with lupus, I invite you to learn more about the disease by visiting http://www.lupus.org/.