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Thu, Aug 31, 2017 10:57am

Hemophilia Camp: A Summer Destination for Children with Rare Bleeding Disorders

By kmcnamara, @kmcnamara

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“The world is waiting for you. Good luck…Travel safe…Go!” If you have ever watched The Amazing Race, you may recognize these words that begin each new season.

Twenty minutes south of Bemidji, Minnesota on Lake George is Hemophilia Camp at Camp Courage North, a familiar territory for some and a brand new adventure for others. This year’s theme: The Amazing Race.

Hemophilia is a rare genetic bleeding disorder that affects a person’s ability to effectively form blood clots. A person with Hemophilia faces an increased risk of internal and external bleeding. Despite the name, Hemophilia Camp also includes children with other bleeding disorders such as Von Willebrand.

We sat down and spoke with Melinda Otto, L.S.W. and Dawn Rusk, R.N. to get the inside scoop on what a typical week at Hemophilia Camp looks like.

Every year, kids between the ages of 7-17 with bleeding disorders come from Minnesota, North Dakota, South Dakota and Wisconsin to spend six days at Hemophilia camp. This camp is like any other summer camp, complete with cabins, hiking, swimming, crafts, low-ropes courses, fishing, and so much more. What sets Hemophilia Camp apart is the multiple trained nurses and medical staff on hand to handle any issues that may arise with the campers and their rare disorders. Hemophilia camp is a partnership between the Hemophilia Foundation of Minnesota/Dakotas, True Friends,  and the regional Hemophilia Treatment Centers (including Mayo Clinic). 

Hemophilia Camp_Tubing

This year, the staff built bleeding disorder education into camp activities to make it more engaging.

“Rather than have separate breakout sessions for learning about their joints, for example, they learned about their joints in a different way- almost like a game. The campers had to go complete a series of tasks, like the Amazing Race, and part of it was learning about what a bleed can do to your joint,” Rusk explains.

They strategically partnered the older kids with younger ones or someone who has been to Hemophilia Camp before with someone who was there for the first time.

“Creating those connections helped the newer and younger campers acclimate quicker and feel more comfortable at camp,” Otto says.

Rusk and Otto agreed the change in approach went well.

“Incorporating learning in this way kept the kids engaged and resulted in a higher level of participation and overall excitement surrounding the subject matter,” Rusk says.

big stickHemophilia Camp’s biggest hit in 2017 was called, “The Big Stick.” At a glance, the big stick is a large log with many medallions hanging from it. The medallions are circles of bark inscribed with the camper’s name and the year, but it is what it represents that makes it special.

To get their name on the big stick, campers have to attempt an intravenous (IV) stick to infuse their factor replacement products. Factor replacement helps a person diagnosed with a bleeding disorder form blood clots appropriately.

“It’s a goal of a lot of campers by the end of the week to get their name on the stick. Even 7-year-olds are attempting IV access, which is awesome,” Rusk says.

“We actually have two Big Sticks now because we’ve had so many kids infuse each year,” Otto adds.

There is a daily celebration to recognize the campers who accomplish this task.

“It’s a big deal,” Rusk says. “They make an announcement at lunch time and all of the kids that completed the day before get to come up and hang their medallion on the stick.”

“It’s such a great atmosphere,” Otto adds. “The kids are clapping and cheering, and celebrating one another’s accomplishments.”

The hype surrounding The Big Stick also helps to encourage the kids who have not tried infusing yet.

“I love to see the older kids encouraging the younger ones and the ones who haven’t yet tried to infuse by saying things like, ‘you can do it, I know you can’ and ‘if I can do it, you can do it.’” Otto says

Campers with ports, a direct access line typically located just under the skin near the chest, are just as included in this activity as those without them. In fact, they too are encouraged to attempt an IV stick. A couple of years ago a rule was created that if a camper has a port, while at camp, the camper has to try their best not to use it.

“Amazingly, in the last two years we have not had to use any ports,” Rusk says.

Hemophilia camp is a great place to not only add excitement into your summer, but also make lifetime friendships, experience Minnesota, and be part of a special community. Camp provides a safe space where kids can learn more about his or her bleeding disorder, and most importantly, a place where kids can just be kids.

 

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Do you have a bleeding disorder or care for someone who does? Continue the conversation in the Blood Cancers & Disorders group.

Hemophilia Camp is an annual event. For more information visit the following websites (2018 dates TBD):

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