Madelyn Saner seeks to spread awareness through stickers

·4 min read

May 14—ROCHESTER — Madelyn Saner has lived with chronic illness for about a decade and has devoted the past two years to making stickers and other products to spread awareness for hers and other's chronic illnesses.

Saner was 11 when her symptoms first began and it's been nearly a decade since. She didn't know the extent at which her life would change in the next few years.

"I was diagnosed originally with postural orthostatic tachycardia syndrome back in 2014, and I was 12 when I was diagnosed," Saner said. "And then, three years ago, I was diagnosed with Ehlers-Danlos syndrome, which is a connective tissue disease. So that can play into the POTS and can kind of cause the POTS. Two summers ago, I was diagnosed with Lyme disease. Earlier this year, I was diagnosed with something called craniocervical instability."

These diagnoses put a name to the symptoms Saner was feeling, but she didn't know of anyone who suffered from POTS, so finding support beyond her family and doctors was hard. She was pulled out of school in eighth grade due to her health and the things that she loved before were no longer doable. Suddenly things like dancing and hiking were completely out of the picture, and she lost all contact with her old friends. For four years, the only human interaction Saner had was with her family and doctors.

Saner eventually started researching and messaging people online who have suffered from chronic illness and wanted to do more to spread awareness. She saw others doing art to spread awareness and she knew that was something she could do, especially from home.

"I've just been drawing and making art my whole life," Saner said. "I just wanted to almost channel the energy I had into things like my chronic illnesses because I was writing about it, but I want to do something more. I have an iPad and I just started drawing and bringing ideas that were in my head onto the screen."

Saner's Etsy shop,


, is her job since her body isn't healthy enough to work in public. She has over 50 different stickers on her shop to bring awareness to different medical conditions and has almost 300 purchases on Etsy. She also has had people reach out to her with ideas or other illnesses they would like to see in her shop.

"I've had quite a few people reach out and thank me," Saner said. "There's certain things that they can't find awareness for, so they're like, 'Thank you for making this.'"

Saner also runs another Etsy shop called MadelynMadeArt where she sells clay jewelry, something she has enjoyed making for years.

Even though Saner can't do a lot of things, she has come to terms with the things that she can do. She knows she has a disability that makes life a little bit harder, but she doesn't see it as a disability.

"Even though I'm disabled, I still have a personality," Saner said. "There's still things I can do that non-disabled people can do. Just because there's certain things I can't do. I still have abilities."

Saner has figured out what her body needs in order to feel better and knows when she needs to take it easy. Her health condition was at its lowest in 2016, but adjustments like medication and dietary restrictions have been able to help improve her condition since.

"When I was at my worst, I had chronic nausea," Saner said. "So at my worst, I couldn't leave the couch. I think I've lost like 20 pounds in a month because all of a sudden my stomach couldn't eat. So, thankfully, my doctor prescribed me nausea meds, which has been a lifesaver."

Saner's health comes in good days and bad days, sometimes needing to use a wheelchair and sometimes being comfortable walking freely. Her family has been her biggest supporters through all of this and encourage her to continue her journey with chronic illness in the way that suits her.

"They've been the ones who have gotten me through everything," Saner said. "They take me to see all the doctors. They still drive me around because I can't drive."

Her mom, a school counselor, has been Saner's biggest supporter and taken her to all of her doctors appointments.

Saner and her mother want to eventually write a book together with one of Saner's sisters, Lauren, who got into a car accident and had a metal rod put in her leg to support a broken femur. Together, they want to share their experiences from someone who was facing medical issues, someone who is chronically sick and someone in the direct support system of people suffering from health problems.

For now Saner is focused on completing her GED. She hopes to get it by the end of the summer and has thought about studying health science as a college major. She is also focused on getting back out into the community and maintaining her Etsy stores.