Oct. 20 -- ROCHESTER -- October is Dysautonomia Awareness Month and local advocators for awareness of the condition gather in Peace Plaza on Oct. 19, 2024.
Madelyn Saner and Lexi Dunn have been advocating for dysautonomia awareness long before putting together an awareness event. Both girls have spent years advocating for their health and rights while managing their different diagnosis. They both have been diagnosed with Ehlers-Danlos Syndromes (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS).
Dysautonomia is a condition that occurs when the autonomic nervous system doesn't function properly. There are many different disorders that fall into the category of dysautonomia like Pure Autonomic Failure (PAF), Multiple System Atrophy (MSA) and POTS.
Dunn and Saner became friends in January over similar struggles and have become very close friends. They also organized a last minute awareness event in May of this year for Ehlers-Danlos Syndromes and other hypermobility spectrum disorders.
Using prior experience, Saner and Dunn had a starting point for Dysautonomia Awareness Month. They began planning in July and are excited to continue growing their presence in the community.
"So we were hanging out at my house, and we were talking about what we wanted to do for dysautonomia awareness and since we had already done EDS Awareness Month, we kind of had an idea of what we wanted to accomplish, but we wanted to do more this time around," Dunn said.
Saner took their ideas and made a Google document outlining the tasks and dividing them between themselves. Saner and Dunn asked Rochester Mayor Kim Norton to proclaim October 2024 as Dysautonomia Awareness Month in the city and Norton was present to read the proclamation aloud to those who attended.
Saner also got a proclamation from Gov. Tim Waltz for Dysautonomia Awareness Month.
"This year is a learning experience for next year as well, because anything that we didn't like this year, or things we think we could improve on, we can always do it next year," Dunn said. "I think our mentality is just keep doing more and more and more. Whatever we did this year, let's do that plus more next year."
For Saner and Dunn, spreading awareness is crucial. POTS is still a fairly new disorder and both women have had to advocate for themselves to family, strangers and even doctors in the health care system.
"We were trying to spread awareness that, yes, it is a physical disability, but it affects us so much more than that, especially psycho-socially," Dunn said. "I think when people are being taught about POTS in medical school or just hearing about it, it's important to understand it from a holistic point of view, rather than just what you read in a textbook. So I think that's why it's so important for us as patients to really be leading the conversation in advocacy and Americans."
They haven't always been vocal and proactive about their struggles.
"It took six years until I even felt like I could talk about (POTS) to people that weren't my family," Saner said. "I didn't use a wheelchair until I was six years in. So I think I started becoming interested in advocacy, once I saw other people advocating, and once I realized how much they had an impact on my life, and I was like, 'If I could do that for someone else, that would make me feel so fulfilled.' That's what I want to do."
Madelyn was 12 years old when she first got her diagnosis, and her sister, Carolyn, remembers when she began to feel more comfortable talking to others. For Saner, her wheelchair made a huge difference and helped her find her voice.
"I work with kids with autism and some of the nonverbal kids have words on tablets and once they get those, they express themselves so much more," Carolyn said. "I feel like that's what the wheelchair did for Madeline. Once she got it, she could move around and I think that's really when she started being able to talk to other people."
Now Saner has found ways to connect and educate others. She currently attends the University of Minnesota-Rochester and her friend, Kasey Gonzelez McGlauchlen, just started a club for disability awareness. They met in class and bonded over the shared POTS diagnosis.
Like a lot of people with POTS, Gonzalez McGlauchlen has mobility issues and cannot walk for too long. She has a wheelchair and walker to help and some days she doesn't need either, but some days she cannot even leave bed.
"I was so exhausted last year, and I wanted so badly to advocate for myself, but I was so tired from making all of these changes and trying to recover and having the doctors tell me to just exercise, or just walk, or you're too young for a walker or that kind of thing," Gonzalez McGlauchlen said.
All three girls are excited to continue connecting with those in the community. They have begun discussing the idea of a support group and other awareness events throughout the year. The next event they would like to plan would be for International Day of Persons with Disabilities in December.