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EDWARDSBURG — Megan Cichoracki has accomplished much in her young life, graduating at the top of her high school class in 2023, achieving a Victors Award scholarship with plans to attend the University of Michigan, and volunteering in her community at StoryPoint Senior Living.

Two of her other accomplishments, winning a Detroit News “Against All Odds” recognition for Outstanding Graduates and creating a social media platform to increase awareness about Ehlers Danlos Syndrome, highlight the impressiveness of all of her feats, as Megan herself lives with the life-threatening genetic illness.

Cichoracki, who grew up in Granger before moving to Edwardsburg in 2020, lived what she describes as a “pretty basic life” of attending school, participating in extracurricular activities, reading, and spending time with her friends. After her father, who wanted a home with plentiful property, found his dream house in Edwardsburg, she spent her time exploring the outdoors and finding peace in all that the local nature had to offer. She described it as her dream town, with a supportive community and water and wilderness all around.

“I love Edwardsburg,” she said.

Ever present in her life were symptoms of her illness, though they began as moderate and manageable, often disregarded as signs of stress or anxiety. Cichoracki was put on psychological medications and was seeing a therapist. She sought help from a variety of doctors, struggling with troubles in her joints and stomach. Though one doctor had pointed to Ehlers Danlos Syndrome as a possibility, the illness’ varied manifestations and rare occurrence dissuaded her doctors from testing for it, putting off the diagnosis until she was fourteen years old, in her first year of high school. By then, symptoms had become life threatening, with Megan unable to keep down food and water.

With her condition deteriorating rapidly, her desperate mother called the specialist where they were already on a wait list, pleading for help. Megan was admitted and hospitalized for months. She finally received the official diagnosis of Ehlers Danlos Syndrome and was given much needed feeding tubes and central lines.

“I went from being told it was all in my head to learning I was going to live with this forever,” she said.

The frustrations for Cichoracki were many, but she found hope in those around her and in her own determination to succeed. With her condition finally diagnosed, she was able to receive the care she needed. Though medical insurance can often be difficult, she described her provider as “very good”, even having an employee dedicated to her case and advocating for her needs. Her friends supported her, visiting her in the hospital and learning enough about her condition that they understand her symptoms and can even assist in inserting her feeding tube.

“I was really lucky to get a good group of friends,” she said.

Continuing school was a challenge, given the frequent absences required by her condition. She was unable to continue at her public school and, seeking a remote option, she found the Michigan Connections Academy. The curriculum offered accommodations, giving Megan a remote education at home or in the hospital, with time to work at her own pace while still having access to high level classes.

“I’ve always been in honors classes, a straight A student,” she said. “That was very important.”

Her teachers supported her, making sure she had the resources she needed. Nurses at her hospital kept her company and encouraged her to stay up to date on tasks from simply brushing her teeth to finishing her homework.

The next step of her journey takes her to the University of Michigan, where she intends to study genetics and medicine. While she’s unsure where her path will take her from there, her focus is on increasing the quality of life and treatment options for those in similar conditions. Her goal is to minimize struggles not only for those with conditions like hers, but for their families and their caregivers. Her experience in the medical world highlighted a need for the branches of the medical world to improve how they work together, especially in the case of uncommon conditions.

“For those of us who do have the rare illness, we get missed,” she said. “I just really want to improve treatments for my condition.”

Megan gave a speech at her high school graduation, expressing to the crowd the lessons she’s from her experience with Ehlers Danlos Syndrome. She advised others to take advantage of whatever opportunities life offers them, regardless of whether they are the same opportunities given to others. She paraphrased a Michael Jordan quote that she used in her graduation speech: 

“Obstacles don’t have to stop you, if you run into a wall, figure out a way to climb it, go around it, or work through it,” she said.

Megan continues to spread awareness about Ehlers Danlos Syndrome on TikTok at @megancichoracki. 

Justin Flagel is the founder of Red Chuck Productions, where he writes, tells stories, and creates new media. Follow his work at redchuckproductions.com. Feedback can be directed to contact@redchuckproductions.com.