Body Cooling Vest
Heat is tough on those with rare genetic disorder
July 21, 2011 - Virginia Higgins of Hazelwood and her son Zane Higgins, 3, who both have ectodermal dysplasias, swim with their family Thursday night at Splash City in Collinsville. "When you can't sweat, this is heaven," said Jodi Edgar Reinhardt of the National Foundation for Ectodermal Dysplasias, whose members are holding their annual convention in O'Fallon, Ill. In addition to being unable to sweat, people with the rare syndrome have problems with their skin, teeth, hair and nails. Robert Cohen rcohen@post-dispatch.com
When Charley Richter was handed his first cherry Popsicle as a toddler, he instinctively rubbed it on top of his head. Richter, who has a disorder that prevents him from sweating, thought the frozen stick was more useful as a coolant than a snack.
About 400 people affected by a group of rare genetic disorders called ectodermal dysplasias gathered this week in O'Fallon, Ill., for an educational and social conference. The disorders are typically marked by abnormalities in the sweat glands, hair, nails and teeth.
Conference organizers said the heat wave is a good opportunity for attendees to learn how to control their body temperatures. Richter, now 33 and a farmer in Trenton, compares the feeling on his skin to a hot air balloon where the heat can't escape.
"The heat is always a challenge, especially on days like today," Richter said Friday. "Even if you can't sweat, you can tell when you're getting hot."
His mother, Mary Kaye Richter, founded the Mascoutah-based National Foundation for Ectodermal Dysplasias 30 years ago to provide support and information that was scarce at the time her son was diagnosed. The annual conference that concludes today serves to educate doctors and dentists as well as give families the chance to interact with others dealing with the syndromes.
The foundation's membership includes more than 6,000 people affected by ectodermal dysplasias worldwide, including 60 families in the St. Louis region.
"I talk to the kids and let them know just because they have this affliction, it really doesn't have to be a limiting factor as to what they can accomplish," Charley Richter said. "We've got guys who can't sweat who are firefighters, and kids playing football in Texas."
The disorder's most common form, hypohidrotic, describes the condition of sweat glands that either don't work right or never developed. Sweating helps to regulate body temperature, keep the skin hydrated and maintain a balance of fluids and electrolytes.
Body Cooling Vest - News
Kim and Fish said the Gaymar cooling vest was an integral part of Howard's treatment, keeping his body from overheating and allowing the health care professionals to save his life. The vest is strapped around the abdomen, upper torso and both legs.
Provisions should also provide access to emergency whole body cooling treatment and a comprehensive hydration program. In a hot environment, the primary way to dissipate heat is through evaporation of sweat. Under severe conditions large amounts of
People with malfunctioning or limited sweat glands can mimic the body's cooling mechanism by spritzing their bodies with water or wearing damp clothes. One mother lines her toddler's car seat with ice packs. Cooling vests can also be worn,
The devices available at the Rehab Unit include a cooling vest, which uses frozen inserts tucked into a strapped vest that rapidly cools the body. They also have giant fans and plenty of fluids available. Jeff Otwell is one of the firefighters that
Mariellen Boss, who has MS, works out with trainer Zack Adams while wearing a cooling vest at Creek's Gym in Palm Desert. / Photos by Jay Calderon The Palm Desert-based nonprofit organization provides programs and services from hour-long
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