Living With Lupus
Are you so chronically exhausted that pouring a bowl of cereal in the morning can send you back to bed? Do you have unexplained fevers, hair loss or tender joints? These symptoms could be a sign you are suffering from lupus, an autoimmune disorder that recently took the life of 23-year-old Alexandra "Sasha" McHale, daughter of Houston Rockets coach Kevin McHale. We talked with Dr. Dixie Swanson, who was diagnosed with the disease 20 years ago. Here's what you need to know about the disease.
What is lupus?
Criteria for systemic lupus
Typically, four or more of the following 11 criteria must be present to make a diagnosis of systemic lupus.
According to the Lupus Foundation of America, at least 1.5 million Americans have lupus, mostly young women. Lupus is an enigmatic, chronic autoimmune disease that can affect any part of the body, including skin, joints and/or your internal organs. Basically, your immune system starts to attack and destroy healthy tissues in your body, leading to inflammation, pain and damage. Lupus can range from mild to life-threatening and should always be treated by a doctor. There are four types of lupus: systemic lupus erythematosus (most common type), cutaneous lupus erythematosus (lupus of the skin), drug-induced lupus erythematosus and neonatal lupus (a rare condition that affects newborns of women with lupus). There is no cure for lupus but there are ways to treat it.
Dr. Dixie Swanson, a former pediatrician and health reporter, was diagnosed with systemic lupus erythematosus two decades ago and has learned to manage the disease. Though she had to give up her dual careers and living a "100 mph life", she is not letting lupus break her spirit.
SheKnows: Who is most at risk for getting lupus and why?
Dr. Dixie Swanson: Lupus usually affects women of childbearing age, roughly 15 to 45 years old. But anyone can get it at any time. Women outnumber men by 9 to 1, but no one knows why. About 10 percent of cases have a genetic component — someone else in the family has had lupus — but why people get it is unknown. It is a classic autoimmune disorder; I call it the ugly step-sister of rheumatoid arthritis. It doesn’t gnarl up your joints, but it can cause damage by inflaming anything it chooses, from your brain to your skin.
SK: How can women protect themselves from getting lupus?
DS: If they have a positive family history for lupus, they should avoid the sun (so should everyone). Otherwise, there is little you can do to protect yourself.
SK: How is lupus diagnosed?
DS: The diagnosis should be made by a rheumatologist. An internist can make the diagnosis, but I prefer a rheumatologist. Why? Once it is on your chart, you’ll have a hard time ever getting health insurance (unless the Affordable Care Act stays as law).
There are 11 diagnostic criteria, and you must have four of them to have systemic lupus. Interestingly enough, fatigue, fever and hair loss are the most common complaints that a patient has, but none of those three are on the diagnostic criteria! Telling a doctor you are fatigued is like telling an Eskimo you are cold. You must be specific: After I pour myself a bowl of cereal and eat it, I have to go rest. That sort of thing is clearly not normal and will get the physician’s attention.
SK: What are the treatments for lupus?
DS: There are a variety of treatments for lupus, and the rheumatologist chooses among them depending upon which organ systems are most involved. Patience is important, as many drugs take months to work.
SK: What are tips for women to manage lupus?
DS: I offer the following tips because they helped me.
SK: What is the best lupus resource that has helped you?
DS: The Lupus Foundation of America has good brochures. My favorite book is Lupus: The Disease with a Thousand Faces put out by Lupus Canada. It is calm and reassuring. A generation ago, lupus was a lot scarier than it is now, as we have more treatment options today.
Never listen to anyone who says, ‘Well, my mother’s Aunt Betty had lupus and… ” That is ancient history where lupus is concerned. It doesn’t apply to you!
"Lupus isn’t something you fight, like you do cancer; lupus is more Zen than that. You learn to co-exist with it, to do what it will let you do."
SK: How has lupus changed your life?
DS: How hasn’t it changed my life would be an easier question to answer.
I found out who my real friends were. Other people sometimes think because you look well, you are depressed or just lazy. Real friends ask what they can do to help.
I was a professional with two careers (medicine and a television health reporter), working 60-hour weeks. I was taking creative writing classes (I was bored) and traveling the world with my daughter in the summer. When lupus steamrollered me, I had to give up both careers, and I still functioned at about 30 percent of normal. But over time, with good care, I improved. I changed my life to fit my condition. Lupus isn’t something you fight, like you do cancer; lupus is more Zen than that. You learn to co-exist with it, to do what it will let you do. For example, I can’t go to the beach (sun is poison for lupus patients), but I can get a room with a view of the beach and read a good beach novel, leaving my friends to fry their skin. Or I can write a beach novel.
It’s also important to give back, even if you are stuck at home. All the delivery guys leave packages for my neighbors with me. They know if they want a bottle of cold water on a hot day, I’m their go-to person. It’s a little thing — and I do other bigger things to give back — but just because you are sick doesn’t mean you get a pass on doing for others. Funny, you forget about your own problems when you focus on someone else’s.
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