HAZELWOOD, MO. (KPLR) - Hazelwood mother Virginia Higgins spends a lot of time inside with her family making preps to keep cool. It’s not just on 100 plus degree days but every day. That's because Virginia and her 4year-old son Zane both have a form of ectodermal dysplasias. A rare condition that stops their ability to sweat. Symptoms also include hair and nail loss.
"We have to plan our activities outside we have to be more aware of the heat and what the heat can do. Our kids we try to do things in the fall and spring so it’s easier to stuff in the outside we just plan around it." said Higgins.
Virginia and her sister have the genetic condition, diagnosed as a child she has found ways to cope through the years. Ice packets and jackets along with ice blankets are among their daily wear. They also keep water bottles and portable fans nearby. The family keeps their air conditioning set at 72 degrees, that's because Zane overheats at 74.
"During the summer that we run around with a wet shirt on in order to since our body doesn't make sweat by wetting the clothes it duplicates the action of sweat."
Don't presume just because it’s a hot day that we can't do things we may have to adapt how we do them but we're completely able to participate in things." she said
According to the national foundation for ectodermal displasias at least 65 families are affected in St. Louis. Experts say the condition affects two in every 10-thousand births. The foundation is holding 6 walks in coordination with awareness for the month of June.
Event information: "Don't Sweat It Walk" Saturday, June 30, 2012 at Scheve Park Depot Pavilion, Mascoutah, IL.
To find out more about ectodermal dysplasias, go to: www.nfed.org