Maia Fleener wanted to get ready for living solo at college. So, when her family was making a move from one home to another in 2021, she volunteered to stay alone in their empty new house. She never dreamed she’d be facing a life-threatening situation that ultimately led to a Vascular Ehlers-Danlos syndrome (VEDS) diagnosis.
“I was planning to move away to college before all of my health stuff and I wanted to experience living alone in my new house,” said Maia.
After helping her family with moving boxes prior to her solo overnight, her emergency started innocently enough – with a nose bleed. By the next day, she was bleeding from her uterus. The bleeding got progressively heavier. By the time Maia was by herself on October 3, 2021, her symptoms started worsening.
“I just started noticing symptoms of, like, my heart beating fast. [Being out of] breath, I’m shaking.
I’m bleeding very heavily, so I called my parents. They took me to the ER, just a local ER hospital where we’re at and [there] I wasn’t taken seriously at all,” said Maia.
Medical Lack of Awareness Leads to Delayed Treatment
A young healthy woman with few to no outwards signs of VEDS or any other obvious condition, when Maia initially presented, getting appropriate care was an uphill battle.
“Nobody looked at me. I was bleeding through everything. I was bleeding through their sheets and I wasn’t taken seriously [for] five hours,” said Maia.
“My [blood levels] dropped low enough where I needed a blood transfusion, so they did like a pelvic exam. But during the pelvic exam, my blood levels were too low, so I spiked my heart rate and…passed out and [was] unconscious from the blood loss,” said Maia.
“And from what my parents told me – I don’t remember a lot of it because I was half there – I was unconscious for 30 minutes and I was turning blue and stuff like that,” said Maia.
Maia was transfused with universal blood and had an adverse reaction. Eventually she was transfused with her own blood type. Maia’s symptoms eventually improved but their cause wasn’t deeply investigated. “They just brushed it off…and just put me on birth control,” she said.
Few to No Outward Signs
Maia has few to no outward signs of VEDS. And, she was adopted from China around age two – so she had no genetic history readily available.
“My parents…say I was very healthy kid when I was younger. I was a dancer. I did cheerleading and then I did a bunch of other sports that were short term. I was a very active kid,” said Maia.
However, there were some VEDS clues that were missed. Maia had symptoms of Reynaud’s syndrome. She had had a high heart rate when she was younger.
“I was just a young girl. It was blamed on anxiety and I was just told to drink water…more water and more salt,” said Maia. She had worn a heart monitor at one point that showed some abnormalities, but “nobody [in the medical field] put their foot down and stepped in,” said Maia.
One doctor later told Maia if they had been testing her for a form of EDS before her emergency event, they would have chosen hypermobile (hEDS) because of her lack of presenting outward signs of VEDS.
Finding Answers: VEDS Confirmed
Eventually, a diligent rheumatologist started piecing together Maia’s medical puzzle. “She was the one who did a full-body exam on me, and looked at all of my medical records in EPIC,” said Maia.
That doctor noted Maia’s hospital admission and referred her to genetic testing at Lurie Children’s Hospital of Chicago, telling Maia she was 99.9% sure that she had VEDS. Within 5 weeks following testing, Maia and her family finally had an answer: VEDS was confirmed.
Awareness: A Newfound Mission
Now a junior in college who enjoys living with her parents and two beloved dogs, Maia is an advocate for increased medical knowledge around VEDS and ensuring that all people who present with VEDS complications are taken seriously and treated quickly and appropriately.
“I’m hoping that more medical providers are more aware of VEDS, because a lot of times when I go in to see any new specialist or any new doctors, I’m the one having to explain how serious VEDS is and how serious the complications can be with any given treatment,” said Maia.
She believes there should be more focus on VEDS in medical literature and training, especially around diagnosis and treatment plans so that providers will become, “much more prepared to be with patients with VEDS versus just the other types of EDS,” said Maia. “Because yes, the other types of EDS are serious, but they’re not as serious as VEDS, so it’s just really the acknowledgement of everybody on your care team of how serious it can be, because they can really help [in creating your] course of treatment plan.”
“I mean, I almost died. A lot of people have invisible symptoms or internal symptoms,” said Maia. She also believes bias can impact care and wants everyone to have an equal chance at longevity and quality of life, “whether it be like your gender or how old you are.” Maia believes everyone deserves to be treated and supported, “mentally and physically.”
Finding Community with the VEDS Movement and the Marfan Foundation
“When I got my genetic diagnosis at Lurie, they were the ones who brought up the Marfan Foundation because my family was looking for a group or a community just to support us along the way and to find research. And then you obviously find peers…support groups, stuff like that. So my mom’s connected to a VEDS support group on Facebook, and then I’ve met people who are also like chronically ill online through many social platforms.”
“It’s helpful that the Marfan Foundation is a very big foundation and getting more recognized because it allows others to dive deeper and learn more about other connective tissue disorders that affect your heart. Because again, there are not a lot of people who know about them. So it’s just a helpful…great source for people to go to if they have any questions [about] supporting you or to help advocate for you any sort of way,” said Maia.
Thrivership and Helping Others
Maia had always been deeply interested in teaching and educating young children. Since her emergency event, her career focus has shifted to include a medical component.
“Since getting sick and then seeing how dismissive a lot of people can be in the medical setting to you, being younger, and then trying to like get the support you want from others I really was looking more into the medical field…I wanted to give back to others but still have…education in my background. So now I’m looking into Child Life [studies] because it’s education and young kids, but still in the medical setting,” said Maia.
Maia, who uses a visible medical device as part of her treatment, says she has learned to welcome questions from curious people because she believes it has become a way to spread awareness about VEDS.
“Questions, especially now having a physical medical device, I get a lot of different [questions] from people…but it’s better to ask than to make your presumed judgments or assumptions to where you are able to learn more about the condition and then help advocate for a condition,” said Maia. She often finds that simple answers like “I need to use a feeding tube because my body can’t digest,” help well-meaning curious people better understand her reality. She also believes setting boundaries matters: “Know that you don’t have to explain to anyone anything unless you feel comfortable doing so,” said Maia.
With the help of her care team at Lurie, Maia is able to take part in physical activity within the bounds of safety so she can remain active. She loves to go to the gym, taking special care to not push her body too far.
“I’m more in tune with my body now and I know if something doesn’t feel right, I’ll either a change what I’m doing or I’ll stop what I’m doing completely,” said Maia.
Maia has remained a thriving young person finds meaning well beyond living with VEDS. “I like to stay busy, I don’t like to just be at home. I am still able to be social with going to school, being on campus, hanging out with friends…and I really appreciate that…under all of the given circumstances I have with my health stuff. Even if that means there’s some adjustments that need to be made, whether I like it or not,” said Maia.
April Dawn Shinske is the Chief Communications and Marketing Officer for The Marfan Foundation. She is proud to lead a stellar integrated marketing and communications team and honored to help tell the amazing stories of our community members.