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A Sunny Day Can Mean All Sorts of Distress Dr. Atul Gawande on Paying for a Health Care
Published: June 19, 2006 December 8, 2009, 10:31 AM
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SUMMERTIME is not so easy for people living with certain SEND TO PHONE December 7, 2009

autoimmune diseases. The sun, heat and even air-conditioning can PRINT When New Fathers Get Depressed
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intensify symptoms and cause problems that linger for months, if REPRINTS
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For doctors who manage those December 7, 2009
diseases, primarily lupus, scleroderma
and Raynaud's phenomenon, the
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challenges of educating their patients
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"These are diseases where an ounce of prevention is worth
a pound of cure," said Dr. M. Kari Connolly, an associate
professor of dermatology and medicine at the University
of California, San Francisco, whose practice focuses on
patients with autoimmune diseases. "A little bit of
overexposure to the sun can present a whole lot of
Etienne Delessert
problems, and if we can get patients to be compliant with
sun avoidance and protection, we can minimize the
chances of their getting additional complications of their disease."

Lupus is a chronic inflammatory disease that causes damage to tissue and prolonged
episodes of pain. The Lupus Foundation of America says that 500,000 to 1.5 million
Americans have received a diagnosis of the systemic form of the disease, known as
systemic lupus erythematosus, which affects the skin, joints, tissue, blood and organs.
About 25 percent of these patients will also develop skin lesions. Discoid lupus, which
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affects only the skin, is found in roughly the same number as the systemic kind; 10
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percent of these cases, however, progress to the systemic form of the disease. What's your score? »
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Lupus is the most common autoimmune disease in which patients are photosensitive, or
reactive to both ultraviolet A and B rays from the sun. The foundation says that 75
percent of patients with systemic lupus and 90 percent of discoid lupus patients will
suffer flare-ups of symptoms from even brief exposures to sun or heat. Page 1 of 4
A Sunny Day Can Mean All Sorts of Distress - New York Times 12/8/09 1:14 PM

suffer flare-ups of symptoms from even brief exposures to sun or heat. What causes
"Photosensitivity can trigger the whole darn disease, including full systemic flare and asthma?
joint pain and kidney failure," Dr. Connolly said. "The younger patients sometimes say, LEARN MORE »

'The heck with this, I'm tired of carrying sun block,' and they'll stay out there, and it's
not just that they are going to give themselves a bad rash. This is something to take
The link between the sun and lupus flare-ups is thought to be a set of inflammatory E-MAILED BLOGGED

protein molecules called cytokines, which are activated when ultraviolet light hits the 1. Mind: Postpartum Depression Strikes Fathers, Too
skin. The skin inflammation that results can create a chain reaction of other symptoms. 2. Well: Firm Body, No Workout Required?
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Julianne Lewis, 35, of Santa Rosa, Calif., said she began to show symptoms that were Help
referred to generically as undifferentiated connective tissue disease 13 years ago. When 4. Patient Money: Knowing What’s Worth Paying For in
her second son was born four years ago, Ms. Lewis became so sick with stiff, swollen Vitamins

joints, aching skin and lumps on her feet that she couldn't get out of bed. Lupus was 5. Personal Health: Shedding Light on a Tremor
confirmed, she said, and since then Ms. Lewis has undergone chemotherapy treatment
6. Recipes for Health: Breakfasts Rich With Grains
and taken immunosuppressant drugs to prevent kidney failure. She also takes blood
7. Recipes for Health: Steel-Cut Oatmeal With Fruit
pressure medicine, an antimalarial drug and occasional steroids to keep her symptoms
8. Fitness: Becoming Your Own Massage Therapist
in check. 9. Well: 10 Video Games to Cross Off Your Child’s Gift
"I have to avoid the sun because I developed the butterfly rash," Ms. Lewis said, 10. Well: How Safe Is Your Chicken Dinner?
referring to the telltale rash that afflicts 40 percent of lupus patients. "It develops across
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my nose and cheeks. I get it pretty severely, and mine will go on my chest and arms. I
have scars on my arms where the rash blistered so badly my skin was burned."

Ms. Lewis said she had suffered flulike aches and fatigue from even a short time in the
sun. She has given up swimming outside with her younger child, she said. Reading a
book on the grass is also out of the question. And while Ms. Lewis says she still plays
softball occasionally, she wears a hat, long sleeves and wraps a handkerchief around her

"It freaks people out because I look so funny trying to cover up," she said. "I have been
slow to come around to the hat and sunscreen thing. And I've probably made myself
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sicker longer because I don't want to accept it." ALSO IN VIDEO »
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Doctors say a UVA and UVB sunscreen is just one component of a multiprong approach Travel gift guide
to limit the extent of her symptoms. Other strategies include sun-protection clothing,
applying a sun-protection coating to car windows and staying indoors from 10 a.m. to 2

But for patients with scleroderma and its most common symptom, Raynaud's ADVERTISEMENTS

phenomenon, the solution can sometimes be as painful as the problem.

Scleroderma is a chronic autoimmune disease of the connective tissue that causes the
skin to become so thick and leathery from inflammation that hair stops growing and
sweat glands strangulate and die. The disease often begins in the fingertips before it
works up the arms and throughout the rest of the body. In 90 percent of patients, it is
accompanied by Raynaud's phenomenon, where blood vessels become thickened, too,
shutting off the flow to the extremities.

The Scleroderma Foundation estimates that of the 300,000 Americans with the disease,
nearly a third have the systemic, or diffused, form. The rest have a form limited to a
certain place on the body.

That is how the disease began in Dolores McCausland of Cape May, N.J. Two years ago,
Mrs. McCausland, 75, had a biopsy taken of a sore on her arm. Doctors confirmed Page 2 of 4
A Sunny Day Can Mean All Sorts of Distress - New York Times 12/8/09 1:14 PM

Mrs. McCausland, 75, had a biopsy taken of a sore on her arm. Doctors confirmed
scleroderma as well as pulmonary hypertension, a common result of the disease's affect
on the kidneys, she said. She takes a combination of medicines to treat her blood
pressure as well as an antihistamine and gabapentin to treat the pain and itching. She is
also treated with oral chemotherapy and an immunosuppressant.

Mrs. McCausland said that covering her arms while driving to avoid exposure to sunlight
or using her backyard pool was nearly impossible because the sores on her arms make
them sensitive to touching.

"If you saw my arms, you would say, 'Oh, my God, there's something wrong with her,' "
Mrs. McCausland said. "You know when you put a blood pressure cuff on your arm? My
arms look like they have been squeezed, and it's forcing the muscle out to my elbow and
shoulder. It's very painful and itchy."

Covering the entire body, even in the heat, is critical for scleroderma patients because
they have greater susceptibility to skin cancer. And since the blood vessels can also
become sclerotic, or thickened, full coverage helps protect people from the shock of
entering an air-conditioned environment.

"The problem is that in the summer these patients go from dramatic warm to cold, and
they can become very symptomatic from that," said Dr. Chris T. Derk, an assistant
professor of medicine in the rheumatology division at Thomas Jefferson University in
Philadelphia. "It's exceedingly rare, but we have people with Raynaud's of the heart
vessels, and they can go into spasms and give you a small heart attack. You have to cover
the whole body because if they can't rewarm the hand, they can break it."

Mrs. McCausland said she coped by keeping her house temperature warm and wearing
Isotoner gloves to the grocery store, even during the summer months.

"People think I'm some kind of nut," she said. "I have never been sick a day in my life,
and I had to come up with this. "

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Past Coverage
A Sunny Day Can Mean All Sorts of Distress (June 19, 2006) Page 3 of 4
A Sunny Day Can Mean All Sorts of Distress - New York Times 12/8/09 1:14 PM

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