"I felt like everyone was on a race track and I couldn’t even walk the damn thing without my body falling apart." A long and extremely turbulent journey to a EDS diagnoses - Tayler G's Story.

EDS is a genetic condition and it was very prevalent throughout my whole life. I experienced pain and dislocations from a very young age, along with a slew of other symptoms and comorbidities that wouldn’t be diagnosed until 20+ years later. I was born with club foot and congenial muscular torticollis. The torticollis was not treated and I still have a cranial deformity and muscular issues as an adult. I was also born with cafe au lait spots that were suspected neurofibromatosis, however I never developed superficial tumors so the diagnosis was not pursued. My symptoms that indicate(d) NF are cafe au lait spots, sphenoid wing dysplasia, ADHD, scoliosis, lower weight and later developed neuromas/tumors. 

I don’t remember much until the age of 4 when I went septic and got septic arthritis in my hip. I went from fine to just hours later a 106 fever. There was no ortho surgeon near by so my parent’s only option was to have a podiatrist (foot surgeon) do the surgery that he had never done before. I was left with quite a big scar on my little body. I was hospitalized for weeks then had to continue antibiotics at home for a few months. 

Throughout elementary school, looking back my EDS was actually more prominent than we thought this whole time. I didn’t like to go out to recess bc I didn’t have enough energy. In 2nd grade our teach made us run a lap if we were restless, I hated that moment everyday. I was pain and exhausting. It was also required to run a mile each semester towards the end of my elementary years, and that was even worse. 

I also got braces and glasses around the second grade. I had a very high and narrow palette (thx eds) with a severe overbite and crowded teeth. I had braces, headgear, rubber bands, and springs with in the 5 years it took to fix my mouth.  

In 6th grade we did scoliosis screening at school and they told my mom they think I have it and go to the doctor. She took me to Shriners but my scoliosis curve was too high up for a traditional hard brace, so we had to travel to a doctor that invented a soft brace that could correct my curve. My brace hurt my body so much. I had to wear it 20 hr per day for 2 years. 

I also was doing ballet, jazz, and tap from elementary school to middle school. Eventually I had to quit or was cut from a team. I was devastated when I was cut from the volleyball team because I couldn’t serve the ball without dislocating my shoulders. I was put into physical therapy for joint and back pain. They blamed my excruciating body pain to my scoliosis, but I always knew there had to be other explanations. I would have to leave class and be in the hallway almost everyday in 5-6th grade due to abdominal pain, headaches, and joint pain. 

Eventually my weekly routine included being “a kid” on the weekends, then I would walk to the chiropractor down the street after middle school where he would relocate my shoulders and ribs that came out over the weekend. Thankfully we knew him well because there were a handful of times he made “house calls” to come put my joints back during important events (such as a dance recital, pictured). This was also around the time my severe period pain started and I was profusely bleeding through my clothes every month. My parents would always have to bring me extra clothes. I was extremely fatigued and slept anywhere and everywhere. I could not stay awake in class and eventually stopped getting “in trouble” for sleeping on my desk. I started having to miss more and more school, being pulled out and taken to the doctor for mysterious symptoms that my teachers were concerned about: hair falling out, nose bleeds, fatigue, allergic reactions, etc. They’d always do a classic CBC panel and nothing came back wrong (surprise surprise). This is also the age where my hearing loss was recognized (I used recognized instead of started because who knows when the true onset was). There was proof I had hearing loss and there were certain mechanisms within my ear that were not functioning, but there was no obvious cause (at the time) so of course I had to have been faking it (/sar). 

The first time I remember actually acknowledging the fact that I cannot keep up with others and my body was no okay was at a summer camp. It was a 5ish day camp around age 13-14. Summer camp is supposed to be fun, but I was miserable. I could not keep up with anyone, I got heat exhaustion, couldn’t leave the cabin, had allergic reactions, and was losing consciousness. 

Soon after this experience, in health class we experimented with tracking our heart rate during exercise to see how “fit” we were. I did mine and my BPM was in the 200s. My teacher made me redo the test 3 times because he thought I was doing it wrong since my calculated max BPM goal was 160s (spoiler alert: I was, in fact, doing it right). My teacher alerted my parents which prompted another visit, but this time something actually came of it. I was diagnosed with POTS. To be honest I don’t really remember my reaction to being diagnosed with POTS, I’d never heard of it before, there wasn’t awareness on social media for it at the time. I did get out of doing the pacer test once my holter monitor recorded some interesting arrhythmias though. I continued to faint but not as frequently as I do now. I tried many beta blockers but they never helped. Although I had an answer, POTS didn’t explain my all over body pain, dislocations, and other symptoms. 

My health was relatively stable throughout the rest of high school. I still left for appointments a lot, I was still sleeping through school, still bleeding through my pants, but I also became very depressed after being put on birth control. Eventually I stopped the hormones and got the copper IUD which perforated through my uterus not long after getting it, but no one believed me and I lived 2 years with my IUD embedded in my uterine muscle. I was still struggling with POTS and my GI issues became a lot worse but of course that was blamed on me being a young thin woman who must have anorexia. I was still doing PT off and on which never had any benefit, and when my mom took me back to Shriners because I was complaining of my hip hurting, they said it must just be scar tissue from my old surgery and to “go do PT.”

I never understood why I felt so different and detached from everyone else at school. There was no way for me to describe it except feeling like everyone was on a race track and I couldn’t even walk the damn thing without my body falling apart. 

When I went to college, I had a little improvement in access to healthcare, but not much. I had gone to see an immunologist for my constant allergic reactions I was having and he was the first one to mention EDS. He said I passed the criteria but didn’t feel comfortable giving my an official diagnosis. I asked my primary about it and he agreed, but again didn’t feel comfortable with the diagnosis. He referred me to a 4 year wait list for genetics. When I brought it up to my rheumatologist, he diagnosed me with ankylosing spondylitis instead since it ran in my family, despite being negative for the HLA-B27 gene. 

I was struggling with nutrients and hydration and would do IVs when possible, but I was a broke 1st year college kid. I finally decided I had enough with my excruciating periods and my gynecologist offered my endometriosis surgery. I accepted, did it, and it was the worst recovery. I couldn’t do anything on my own for weeks. I later found out he did an ablation (I didn’t know there were other options at the time) and I had massive bowel adhesions that he didn’t “count” as endo because they weren’t “classic black endo.” 

I moved for college again, but this time to a different state with more up to date healthcare. I was able to get set up with a good team of doctors. I was started on outpatient weekly IV fluids to help with my debilitating POTS symptoms. I was also referred to a sleep clinic where I was diagnosed with narcolepsy (not sure how accurate this is now). I was tested for ADHD and diagnosed, my medication treated both narcolepsy and ADHD. There were so many “little” things that would pop up like TMJ issues or a tumor on my foot. I had recurring ovarian cysts and continued pelvic pain. This was also the time of my life where I had a dentist accidentally extract the wrong tooth and EDS has affected that in many ways. Most importantly though, I was OFFICIALLY diagnosed with Ehlers Danlos Syndrome!

Sooooo… it was a little more complicated than just “I was diagnosed with EDS.” The geneticist I saw (which was/in one of the most regarded in the country??) at the time didn’t “believe” in using “Hypermobile Ehlers Danlos Syndrome” as an official diagnosis because of the lack of genetic data (which is strange considering he didn’t even order genetic testing on me since I was “textbook hEDS…). Instead, he gave me the diagnosis of “multifactorial EDS.” At first this didn’t bother me, in my mind EDS was EDS, period. However, as I tried to seek out treatments I was constantly met with doubts and questions about my diagnosis of EDS (ya know.. because that’s not a real subtype of EDS). Looking back I get what he was going for, there are probably many subtypes of EDS that haven’t been identified yet, but giving your patients a made up diagnosis isn’t helpful. After months of obstacles I went back and asked if for paperwork sake (and my own sanity sake) he would call it hEDS rather than multifactorial. He agreed and said he’s only given the hEDS diagnosis to a handful of patients who “truly” meet the diagnostic criteria (whatever that means). I later sought out connective tissue genetic testing to rule out other types since he had no interesting in doing that. 

Although this is the point in the story where I’m finally diagnosed, I don’t feel like my EDS story ends here, not even close. This is just the beginning of it all. 

Now that the door to EDS comorbidities was opened, my doctors took my symptoms a lot more seriously. It didn’t feel like as much of a battle to get the proper testing and care I needed. It all felt rather fast but also excruciatingly slow all at the same time. I got lots of scans and tests done and was finally getting answers to lifelong problems, but it was all at once. I was diagnosed with MALS, pelvic organ prolapse, degenerative disc disease, cervical instability, tethered cord, PCOS, hip tumor and MCAS all within a few months of each other. Don’t get me wrong, I’m SO grateful to have finally had access to the kind of medical care I needed, but it was VERY overwhelming to do all at the same time. I fully believe that if I would’ve gone undiagnosed with EDS, none of these issues would’ve been taken seriously or found in a timely manner if at all. 

I was able to get a port placed for IV hydration, get surgery to remove my hip tumor, released my tethered cord, and put my MALS into remission. But of course it couldn’t have been that easy I didn’t realize the lengths you had to go to in order to find doctors that know what they’re doing. Unfortunately I had MALS surgery before knowing the full picture regarding all of my vascular compressions and was diagnosed with SMAS, NCS, and MTS as well. 

Just when it finally felt like my body was calming down, I found a lump in my breast. After many scary months it was determined to be benign, but needed to be removed. At the same time my thyroid started acting up and I’ve been swinging from hyper to hypo the last few months. 

The biggest development recently has been my diagnosis of visceroptosis, colonic inertia, and dumping syndrome (yes I know those sound very opposite of each other - they are). I mentioned before that I have pelvic organ prolapse, but it also turns out that I have abdominal organ prolapse also which includes my stomach, small intestine, and large intestines. Along with the visceroptosis, I have severe colonic inertia that’s been present since childhood (basically my large intestine is paralyzed).  Contradictorily, I also have rapid gastric emptying (aka dumping syndrome) that is symptomatic and not helping my SMAS whatsoever. Again, I doubt most, if any, of this would’ve been found or even considered without my EDS diagnosis. I had to push and shove to get testing for visceroptosis because it’s still so unknown and understood and I wouldn’t have considered it without knowing it’s almost exclusively found in EDS. 

Tayler G

she/her/hers