SPOTLIGHT ON HEALTH Elusive Hereditary Disease--Year-Round Allergy To Cold

(NAPSI)-Life has changed for Diana Hunt. No longer is she bundling up in long johns and socks before leaving her Tampa, Fla., home, even in the summer. No longer does she flee air-conditioned work conferences or important family outdoor activities and head for bed, exhausted and in pain. That’s because it was only a few short years ago when doctors finally learned enough about her rare, debilitating condition to name it--Cryopyrin-Associated Periodic Syndromes, or CAPS. And earlier this year, the U.S. Food and Drug Administration approved a medication to treat it. Like Diana, people suffering from CAPS often avoid professional, family and social events that might expose them to cooling temperatures. Any temperature change, no matter how subtle, can trigger severe rash, fever, chills, joint pain, eye redness or pain and fatigue, rendering those with the condition unable to participate in normal, daily activities. “I kept this all secret. Only my family and closest friends knew,” said Hunt, 62, a paralegal, recalling a lifetime of coping with a hereditary disease that was so elusive and unknown that it had no name. Diana would react to even a slight drop in temperature by breaking out in head-to-toe hives and experiencing pain in her joints so severe that she was unable to walk. Fever and chills would often follow. The only relief was to go to bed, under many blankets, often early in the afternoon, until symptoms started to resolve the next day. There were lost school days as a child. Teachers even sent her home thinking she had the measles. She wore long-sleeved jackets while other teens wore strapless gowns. There were even awkward moments in the swimsuit competition at the Miss Indiana beauty pageant, where Diana wore her mother’s fur coat, until the moment she stepped on stage, hoping beyond hope that her skin would not break out immediately. Instead of celebrating her runner-up status at the conclusion of the contest, Diana had to retreat to bed under many blankets to warm up until her symptoms subsided. Then, as a young mother in Detroit, she was trapped in an ice storm for five hours with a symptom-wrought, crying infant son who had inherited the condition. That was the final straw--she vowed to move to Florida, where she thought that life would surely be much easier for a family tortured by the cold. “It turned out the air-conditioning was just as brutal for us,” said Hunt. Her job as a paralegal in Tampa meant bringing a space heater into her office and dressing for court in a long skirt to cover her long underwear and boots. Every time she entered a room, she immediately searched for a seat far away from the air conditioner. Several hundred people in the United States suffer from CAPS. In Diana’s family alone, it has affected her father, sister, two sons, and several uncles and cousins. If you think that you or someone you know has CAPS, print out and complete the attached checklist of symptoms and bring it with you when you speak to your health care provider. The information can help your health care provider make an accurate diagnosis and understand what you are experiencing. For more information on CAPS, visit www.capscommunity.com.

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