"After 5+ years of nearly daily pain and medical gaslighting, I finally had an answer and a diagnosis" Sierra's Journey with POTS and navigating disbelief.

Hi! My name is Sierra Erdman-Luntz. I am now 24 years old, working my dream job, and live

independently all while coping with hEDS and co. Specifically, I’m diagnosed with hEDS, POTS, MALS, occipital neuralgia, thoracic outlet syndrome, migraines, anemia and have suspected MCAS and endometriosis. I’ve been central line dependent for the last almost 3 years for my hydration due to a combination of my gi issues, inability to tolerate water, and severe POTS. I now have a wonderful team of doctors who all specialize in hEDS and whose treatment plans have genuinely saved both my life and my quality of life. I also share the ins and outs of my experience being a disabled young adult on my tiktok page @chronically.sierra!

But, it wasn’t always that way...

I was relatively healthy growing up. Sure, I got sick a lot and sometimes my joints hurt and I was very flexible...but that’s normal, right?

Then I got mono when I was 16 and never recovered. In fact, my health continued to get worse. Over the next 3 years, I had normal blood test after normal blood test, was told I would “get over it,” and questioned if I really even was sick. My stomach started to cramp, my head hurt, my body and joints ached. Something felt *wrong* but not a single doctor could find an explanation. The pandemic hit the end of my freshman year of college. By the beginning of my sophomore year, I couldn’t even go up a flight of stairs without panting for breath. I was exhausted and spending all my time in bed. I only had an hour or two a day when I was able to be up and “doing things.” I had to take a medical leave of absence from my DREAM COLLEGE because I was too sick to attend even virtual

classes. I went through the Mayo Complex Case Program and had a full week of back-to-back tests and doctors appointments. By this point, I’d done some of my own research and asked specifically about POTS, hEDS, and vascular compressions, feeling they were most in line with my symptoms and lived experiences. While I was diagnosed with POTS, I was told my symptoms were not “extreme enough” for either hEDS or vascular compressions and that they were too rare to be considered. I started lifestyle changes and prescriptions to help control my POTS and slowly went back to living life. I returned to college. I even studied abroad for a summer. I was still sick, my joints and stomach still hurt, sometimes I couldn’t eat well and accidentally lost weight, and I ended up in the ER every once and awhile for fluids due to dehydration, but I was getting by.

In November of my senior year of college, after taking a hot shower, I sat down at my desk and could not maintain consciousness. We estimate I had either pre-syncope or syncope (almost fainting or actually fainting) upwards of 200 times over the next 12 hours. I immediately went to the ER and was admitted for several days. No one was really sure what happened, and it was chalked up to a really bad POTS flare caused by dehydration—my stomach had been particularly painful recently, and I’d been really struggling to eat or drink enough. Over the next six months, I ended up in the ER on average every two weeks, fainting excessively and unable to keep down anywhere near enough food or water. My doctors told me I was not medically stable enough to fly, and my parents had to drive down to my college to bring me home for winter break. I wrote a large chunk of my senior thesis admitted in the hospital. The inpatient GI team did not know what was wrong with me, and, rather than admitting they weren’t sure, they told me it was my fault. I was referred to therapy and told school was “probably too hard for me” and that I needed to drop out. (Yes, I am still mad about that.)

Until a doctor who wasn’t even supposed to be my doctor was on my hospital floor and heard about my case. She came into my room, asked me a handful of questions, and told me she thought she knew what was wrong. One urgent doppler ultrasound later, and I was diagnosed with MALS, a very rare vascular compression that was causing my GI pain. After 5+ years of nearly daily pain and medical gaslighting, I finally had an answer and a diagnosis. Someone finally believed me. That doctor introduced me to another doctor who specializes in POTS. I was able to get an urgent appointment for the next month—unheard of with her year-long waitlist. I fainted at least 8 times during our appointment, which ended up with her dropping me off at the ER to be admitted for emergency stabilization. She also decided I needed long-term access to hydration that wasn’t dependent on my broken gi system. She had a port placed the following month, and I started infusions 5 times a

week. I was officially artificially hydrated (a form of life support), and it saved my life. I suddenly had enough energy to not only attend my classes but also have a social life! It was medically safe for me to be alone again! I was getting my life back!

Now, don’t get me wrong, adjusting to my first medical device was HARD. And, it was 1000% worth it in my case. I was able to graduate college with double honors and move to the city into my very own studio apartment. Things were relatively stable for awhile.

And then March 2024 hit. My line started to feel really sore, my energy was almost nonexistent, and I felt sick sick. My port had contracted a staph infection, and it’d hit my bloodstream. I was admitted to the hospital for IV antibiotics, and my parents emergency flew in from out of state. There were some concerns about sepsis and endocarditis that luckily didn’t happen, but it took days to determine I was in the clear. I was admitted for a week: the doctors had to surgically take out my port and later placed a picc line. It was the sickest I’d ever been. I had a picc line throughout the summer, but then it started migrating into my heart and causing v-tach (a dangerous heart rhythm). So, they had to pull my picc, and we retried a port.

Unfortunately, I was back in the hospital with a staph infection 6 weeks later. (In large part due to a nurse’s error.) I’d caught it early, thankfully, so it was a localized infection rather than a bloodstream one. I was still in the hospital for a week and my mom came out, but I didn’t feel all that sick. By this time, I was infusing saline daily, and my care team and I decided that a tunneled hickman line posed a smaller infection risk than a port access nearly all the time, especially given my history. I’ve now had that hickman placed for just over a year and have had NO COMPLICATIONS!!

In March 2025, I saw the same doctor who’d placed my line and heads my care. She officially diagnosed me with hEDS (something we’d highly suspected for a long time), occipital neuralgia (something I’d just learned about), and thoracic outlet syndrome (literally heard about it for the first time at the appointment lol). It was very validating and also very overwhelming. I finally felt like I had the full picture of my health and was at least starting treatments. I felt confident in my medical team and their belief in me and concern for me.

In April 2025, I started sharing my story on TikTok. In September 2025, I started my dream job that is full-time AND fully in the office. I’ve only had one ER trip in the last 18 months. I haven’t been admitted in that time at all. I’m working my dream job, living alone, have energy for my friends and fun activities, and am in a happy, long-term relationship with someone who loves me AND accepts all my health ups and downs. I’m still on life support and need to run an infusion daily, I take so many pills everyday, and I’m still in

pain all the time.

But, I’ve found balance between my health and the rest of my life and gotten my life back, and I’m oh so grateful.

xx Sierra

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Clinical definitions will never capture the full weight of living with these conditions.

But we can.

Chronically Me.