Dealing with a devastating disease:

G’twn woman’s profile in courage

By DENISE MAHER

Most people would think a woman who spent her nights ironing baby doll’s clothes must have had too much energy and time on her hands. But for native Germantown resident Sandra Sowell-Scott, it was about making everything around her perfect when her health was falling apart.

Scott told her story during lunch with 200 other lupus patients attentively listening and laughing during a recent “Living with Lupus” conference at the Marriott in West Conshohocken.

Scott, who was diagnosed when she was 23 (30 years ago), tried for a long time to ignore the changes lupus made on her life. She didn’t want to accept that she couldn’t do the things she once could — like wear heels, dance or even put her earrings on in the morning.

From constant fatigue to swelling and arthritic symptoms in the joints, lupus can take a toll on the entire body of an affected patient, physically and psychologically. But Scott refused to believe she couldn’t just work her way through the disease.

So, she spent nights awake, despite her husband Bob’s concerns, doing all sorts of work.

“I had to be super mom, super at work, super wife. If there wasn’t any work to do, I created it,” Scott said.

Scott went on to her get her master’s in business administration from the University of Pennsylvania and has completed all work but her dissertation for her Ph.D. in African American Studies from Temple University.

Despite her ailments, she’s kept busy, getting up sometimes at 5 a.m., walking her 16-year-old daughter Imani to the bus stop, and getting to work, making breakfast, phone calls and sending e-mails.

Scott’s hands and legs have been most affected by the side effects of lupus. Her hands are twisted, so she must use a speakerphone and type with two fingers to get her work done. It’s all about organizing the day beforehand for Scott.

“Plan. Plan. Plan. Plan,” is what Scott always says.

Each night she has to lay out everything she needs for the next day — earrings, jars that need to be opened — whatever she wants to use. If she doesn’t plan on using something, she probably will not get to use it.

It forces her to be creative. If there’s a bottle or jar that her husband doesn’t open before he leaves for work that day, she tries to find a way to do it herself. Sometimes this lack of ability to open things leaves Scott in a tough position. One summer day, her front door swelled from the rising humidity and she couldn’t get out to go to the doctor. “That was frightening.”

Despite the drawbacks of the disease, Scott emphasized the importance of keeping a positive attitude and always laughing. “You have to be other-centered. Before [diagnosis] I would break a nail, and that would just ruin my day. Now I break a nail, and I just keep going.”

The search for creative ways to overcome difficulties is the key to overcoming any kind of illness, she said. “You can always do something; there’s always a way.”

Scott spends most of her time now consulting about youth entrepreneur programs since she founded and worked with one for over 10 years at Temple University. She keeps busy, and has finally realized not to fight herself. She’s learned to play the hand she’s been dealt.

October is Lupus Awareness Month. To get involved with projects in the area, like the Lupus Loop, a five-mile run and walk on Sunday, October 31, or for more information about lupus, go to www.lupus-sepa.com or call the local chapter at 215-517-5070.

Lupus is a chronic inflammatory disease that can affect various parts of the body, especially the skin, joints, blood, kidneys and central nervous system. It is one of the classes of diseases known as “autoimmune.” For most people, lupus is a mild disease, affecting only a few organs. For others, it may cause serious and even life-threatening problems. More than 16,000 Americans develop lupus each year. It is estimated that 1.5 million Americans currently have lupus. There is no known cause or cure.