First lymphedema summer camp in US brings families together

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BRYAN COUNTY, Okla. (KXII) - "It's not widely known at all. That's how everything is. It's crazy, I know. We had to fight to figure that much out,” said Kasey Rubin, a volunteer and camp visitor at Camp WatchMe.

Children participate in "Rec time" while their parents complete a group session at Camp WatchMe on July 20, 2019.

Kasey Rubin and her 3-year-old daughter Cora came all the way from Minnesota to Mead, Oklahoma for her first summer camp.

Camp WatchMe is the first summer camp of its kind in the U.S. and it’s going on this weekend in Texoma. Kids with lymphedema and their parents get to learn more about the disease and connect with other families.

Lymphedema is a chronic condition where skin swells due to excess lymphatic fluid in the body.

Betty Westbrook organized Camp WatchMe to educate parents whose children are living with the disease while their kids get to experience summer camp.

"This condition affects adults and children alike. A lot of children are born lymphedema where they usually develop it primary. It can also be caused secondary, relating to an injury." Westbrook said.

Westbrook said lymphedema is the most under researched and under diagnosed condition, and common ways for treatment to reduce pain includes wearing compression garments, bandaging or surgery.

"Treatment normally, when Cora is not reflecting that is at least 10 hours a day wearing the compression garments," Rubin said.

Rubin said her travels with Cora has taken them as far as Germany for a surgery. But this weekend Cora got to meet other kids who are just like her.

"So, the kids that we have here, they have never met another child with lymphedema," Westbrook said. "In the case of this, they come here this weekend and these five kids are the only five kids they've seen with lymphedema in real life."

Camp WatchMe provided the registration fees for the families through sponsors, and is expected to return next year.