Amy Sundin Unger is the Executive Director of a non-profit and an athlete thriving with hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Diagnosed in adulthood after years of unrelenting symptoms, Amy has created a life that balances creativity, chronic illness, and advocacy. In this interview, we talk about the long road to diagnosis, finding joy in adaptive sports and the power of connecting with other disabled people.
Alt Text: Portrait of Amy, a white-skinned woman with short light brown hair. She is wearing a short-sleeved black t-shirt and purple pants. She has arm tattoos, finger splints and is posing with a purple cane.
Would you mind sharing about your disability?
Amy:
I was diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), and I also have POTS (Postural Orthostatic Tachycardia Syndrome). I’m still waiting for my medication to fully kick in.
Laura:
There’s a medication for POTS? I didn’t know that.
Amy:
Yeah! I saw Dr. Grubb, down in Toledo, he runs a dysautonomia clinic. It took me a while to find the right place, but they actually have some treatments that help. I’m on Corlanor now. It changed my life. My fatigue was gone in two days. I couldn’t believe it. I’m hoping it keeps working.
Laura:
When were you diagnosed with Ehlers-Danlos?
Amy:
One or two years ago. It was a long road. It’s incredibly hard to get diagnosed because so few providers understand it. Luckily, I had a primary care physician who was willing to go down that road with me. I went through several specialists and eventually got to the Beaumont Adult Genetics Clinic.
Geneticists in Michigan usually won’t see people with hEDS unless they suspect a more severe form, like vascular or classical EDS, because there’s no known genetic marker for hypermobile type. My connective tissue panel didn’t show anything definitive, so they relied on family history and symptomatology.
Laura:
Was it a relief to finally get the diagnosis?
Amy:
Huge relief. It let me move forward and start figuring out treatment.
Laura:
How did you first suspect you had EDS?
Amy:
Joint pain. Lots of it. I already knew I was hypermobile, it’s obvious. I’m a nine on the Beighton scale. My physical therapist said I have some of the bendiest elbows she’s ever seen, and she specializes in hypermobility. So I was flattered.
She was key to me getting diagnosed. She documented everything and encouraged me to keep pushing. I wasn’t sure if my symptoms were “severe enough,” and she was like… yeah, maybe follow up on that.
Alt Text: Full frame portrait of Amy, a white-skinned woman with short light brown hair. She is wearing a short-sleeved black t-shirt and purple pants and floral printed shoes. She has arm tattoos, finger splints and is posing with a purple cane.
Living with POTS
Laura:
How did you start to suspect you had POTS?
Amy:
I was getting short of breath and dizzy just from standing. My smartwatch started giving me clues, like my heart rate would spike when I stood up. I’ve had exercise intolerance since I was a kid. I was athletic, but only to a point. I also had light sensitivity, nausea, GI issues… the whole dysautonomia checklist.
Also, I failed my tilt-table test, though not in the POTS way. I failed it from a vasovagal response. My blood pressure just tanked and I passed out. I wasn’t too worried though. They had the IV ready and everything. I came to pretty quickly.
I was officially diagnosed at the dysautonomia clinic, they did a simple “poor man’s POTS test.” They took my seated heart rate, had me stand, and it immediately jumped to 130. They were like, “Yep, congrats!”
The doctor there is Dr. Blair P. Grubb. He’s published research on POTS. He has a long waitlist, but the Physicians Assistant, Beverly, got me in within a few months, and she’s great. The whole team is amazing. They handle out-of-state care and coordinate everything. If I need labs, they send the orders and I get it done locally.
My insurance covered Corlanor. It’s still a brand-name drug, and some people have trouble getting it, but I got lucky. They even had a copay card to bring the cost down to $20.
Laura:
It’s amazing what a difference the right care can make.
Amy:
It really is. I didn’t realize how bad the fatigue was until it lifted. Fatigue feels like it lives in your soul. Now I just get normal-tired. I can come home from work, go to the store, cook dinner. It’s like, wow.
What do you like to do for fun?
Amy:
I still do athletics. I do seated archery at Rising Phoenix in Troy. I shoot Olympic recurve style, it's a big fancy bow, lots of gear. I also curl at the Detroit Curling Club. I actually look able-bodied when I curl. But I wear braces, use KT tape, and my cane becomes my broom, literally. It’s my third point of contact on the ice for balance. I still have to prep with Advil and be careful. I’ve had to modify my delivery because of hip issues. Melissa and Stan are happy I’m staying active.
I also make quilts! I have to take breaks, wear ring splints, and use an ergonomic rotary cutter. I recently made a zebra-themed quilt, zebras are the EDS mascot. One of my quilts was randomly generated. I rolled dice to pick colors and block orientation. It turned out great.
I’ve also been connecting more with the disabled community online. There’s this lingerie brand called Liberare that makes adaptive bras. They started a small social network for disabled people, anyone can join, even if they self-identify. It’s a great place to talk to people who just get it.
They hire disabled models and actually listen to feedback. They re-released a bra design based on community input. It’s legit.
Alt Text: Close up shot of Amy’s hands resting on her purple cane.
What motivates or inspires you?
Amy:
That’s a tough one. I’m not a big “five-year plan” person. But lately, connecting with other disabled people, mostly online, has kept me going. Just knowing I’m not alone. Being able to say, “I’m not up for going out today,” and have people understand.
Laura:
It makes such a difference. Are you the only one in your family with EDS?
Amy:
I’m the only one diagnosed, but my mom shows a lot of signs. When we did the Beighton test together, I was like, “Yeah, you definitely have this.” She’s in another state, but there’s a specialist near her if she ever wants to pursue it.
What change would you like to see for people with disabilities in the future?
Amy:
Access. Plain and simple. The logistics of going anywhere can be exhausting. Will there be a ramp? Is the elevator broken? Is there an accessible bathroom? Even the building I work in has an “accessible” bathroom, at the top of three flights of stairs. It’s ridiculous.
Also, people don’t realize how varied disability can be. It changes from day to day. Disability can happen to anyone at any time. If you live long enough, chances are you’ll be disabled at some point.
Laura:
Yeah, you’re going to be glad this stuff is in place for you someday.
Amy:
Exactly. Accessibility helps everyone. Very few able-bodied 90-year-olds out there.