Sage Ver Steeg, a junior at Luverne High School, shows a few of the special gifts included in care kits for “The Visibility Project 1125” she developed last year. Ver Steeg’s FCCLA project received a boost when it was selected for a $500 grant through Disney’s Youth Service America program.

LHS junior develops project to bring visibility to invisible illnesses

Former high school cheerleader Sage Ver Steeg looks like her classmates on the outside, but inside she doesn’t have the energy to keep up with her 17-year-old peers.

Last year Ver Steeg, a junior on Luverne’s FFCLA team, delivered a simple speech about invisible illnesses.

This year she went a step further by developing a website that offers support and care kits to those affected by invisible illnesses. It also educates those who are not.

Ver Steeg, daughter of Brad and Amy Ver Steeg of Luverne, has Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder that causes sudden joint dislocation and pain.

She suffered her first bone dislocation two years ago when she was a freshman.

“Ever since I was little, I had joint pain,” she said. “We thought it was growing pains until I got older.”

Cheerleading became an activity of the past when Ver Steeg was also diagnosed with a common illness that often accompanies EDS.

Postural orthostatic tachycardia syndrome is a condition in which the change from lying to standing causes an abnormal increase in heart rate. Dizziness, nausea and blurry vision usually accompany the racing heart.

Medications keep the illnesses under control, and Ver Steeg has turned her focus to less physical activities, such as Future Career and Community Leaders of America or FCCLA.

“It’s been a drastic change since high school started,” she said. “That’s why people don’t understand my illness —because it’s not something they can see.”

From the outside Ver Steeg appears to be a healthy teenager until a sudden pop from one of her joints echoes in the classroom or she becomes dizzy as she leaves for her next class.

Students afflicted with asthma, diabetes or dyslexia often feel similarly misunderstood — sometimes hearing comments like, “Stop faking,” or “She’s looking for sympathy.”

Ver Steeg wants to change those perceptions because others like her are affected by invisible illnesses.

For almost a year, VerSteeg devoted time developing an Instagram site called “The_Visibility_Project” to bring awareness to conditions that aren’t visibly noticed.

She received a $500 grant from Disney’s Youth Service America, which has a goal of inspiring young people to make a positive impact in their communities.

“I like the idea of giving back to the community that has helped me understand my illnesses more,” she said.

Care kits are assembled from the grant dollars. The kits range in cost from $30 to $40 including shipping.

Each kit contains a pair of socks, lip balm and a special gift based on information provided by the applicant.

With each kit Ver Steeg has included a card that reads, “Something fuzzy for your feet, something sweet you cannot eat, something I thought was neat.”

The neat gift could be a CC Bean hat, adult coloring book and pencils or a blanket personally sewn by Ver Steeg.

Ver Steeg has filled two care kits and is in the process of assembling four additional kits.

“It’s just something to make them feel better,” she said. “Helping people helps me feel better.”

Locally Ver Steeg will educate elementary children later this spring about invisible illnesses and teach empathy for those not afflicted.

Next week she will present her visibility project at the regional FCCLA conference Jan. 31 in Tracy. She will compete in the STAR event or Students Taking Action with Recognition.

As a senior next year, Ver Steeg intends to continue her visible project with community residents sponsoring the costs of a care kit or its shipping.

Questions can be directed to Ver Steeg at thevisibilityproject1125@gmail.com.

“I want to make it easier on people because they are already battling their bodies. They don’t need to put up with people being ignorant,” she said.

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