Sickness doesn’t just affect the individual that is sick, it disrupts their entire support system. It’s easy to miss the impact on friends and family

Six weeks ago, I did the smart pill test where you swallow a massive wireless ingestible capsule that records the motility at different points in

Due to issues with turning my neck because of fusions/instability and neurological issues, I’m not yet able to drive myself to school. My house is

I was hoping that I would never have to make this post, but it’s officially been two years with a feeding tube. I’ve talked about

Life will get better. It’s hard to believe at this moment when the IV pump won’t stop beeping and nurses keep waking you up for

This week was my first week of college! I honestly still find it hard to believe that I am now a full-time college student.  It

Monday was my last day of home health PT. Since I’ll be attending college this fall (as a day student), my insurance won’t cover home

Biopsies With EDS, patients often have systemic reactions to micro-traumas that usually would not occur in other people. For example, in Utah, I had five

​​If you have ever found yourself needing to see a highly specialized physician, you likely experienced months/years of waiting for that appointment. In my case,

Disability representation in STEM is so so important. This summer I’ve had the opportunity to participate in the Norris lab, and I think that this

Early afternoon on Monday, I was admitted for uncontrolled pain and fever. I had a great weekend spending time with my cousin and even felt

I graduated high school… from bed. My high school experience was far from traditional. This photo of me is actually a great representation of it.

While inpatient, a CT of my abdomen showed that my GJ tube migrated out of my stomach wall. The doctors weren’t sure what caused this.

Thank you so much for the outpour of prayers and encouragement. The past week has been scary and chaotic. Last Thursday night (after a very

This week I had the opportunity to watch three neurosurgeries, two of which have previously been done to me.  I observed a tethered cord release,

18 did not treat me too kindly. One year ago today, on my 18th birthday, I was incapable of sitting upright due to severe symptoms

It’s a common misconception that an individual can’t live a full life while sick. Yes, sometimes chronic illness can completely dictate one’s life and limit

Happy Nurses Appreciation Day!! Well, it is not actually Nurses Appreciation Day…but I truly believe we should all appreciate the vital role nurses play every

Great news! I’m tolerating feeds at my goal rate through my new GJ tube. Having the ability to vent/drain my stomach has helped tremendously. Since

While I am making tremendous progress in almost all aspects of my health, here’s an update on the not so great aspect: my GI system.

It’s with great excitement that I share with you that the $1.2M Operation Upright goal has been met and we will be able to bring

People with EDS or rare diseases are often referred to as zebras because of a phrase commonly taught in medical school “When you hear hoofbeats

Last Saturday, I was admitted for TPN. It was administered through my PORT starting Sunday evening and things seemed to be going well. I had

790, may be just a number to most, but now, it means a whole lot more to me. My surgeon is among the few experts

Tomorrow’s the big day…  I’d be lying if I didn’t say that I’m very nervous but more than anything I’m hopeful and excited to get

When the surgeon stated that MALS surgery is technically an elective surgery, I thought he was joking. To me, there seems to be no other

Today marks week 2 in the hospital. Although they don’t know a lot about EDS, MALS, or SMAS, the nurses and physicians have been very

Today I had an emergent port placement surgery because accessing my veins has become impossible.  I have always been a ‘tough stick’.  When the nurse

Last Wednesday, I was admitted to the hospital for pain control and hydration. After the celiac plexus block, the pain came back worse and with

Given that moving my diaphragm hurts me, I am not talking out loud much these days, but there is a lot of conversation going on

I got a celiac plexus block! This was done endoscopically while under anesthesia. The goal of this procedure was to serve as a diagnostic tool

The past few days have been a whirlwind of doctor’s appointments, scans, and tests. My CT angiogram showed that my Superior Mesenteric Artery Syndrome (SMAS)

So I jinxed myself. Someday I will learn not to get my hopes up so high and speak prematurely, but that day hasn’t come yet.

Do you ever feel like you are throwing darts and dollars at an invisible target? I had a big doctor’s appointment recently with a well-known

This week, an article was published on CNN discussing hypermobile EDS with the headline “This mysterious disease affects millions – why isn’t the medical profession

I have never been more grateful for good nutrition. I stopped tolerating feeds for a few days this week and experienced a small taste of

I have been making some great progress over the past two months. Unfortunately, I have seen no improvement in my GI symptoms, but I’m going

Healing is not linear.  I’ve had a big reminder of that this week.  I won’t get into all the details but basically, when we moved

As many of you know, “A Concert of Hope” was a fundraising event in support of Operation Upright that took place on November 6, 2022.

At 7:30 on September 13, I was wheeled back into the OR once again. Dr. Klinge had kindly taken the time to explain the process

Finally, after 20 days spent in my local hospital (mostly in the ICU), a hospital-to-hospital transfer was approved. My parents and the case manager at

Exactly one week after I was admitted, one of my biggest fears came true. I had sepsis. This was an absolute nightmare. The medical team

I’ve been putting off writing about this for a while now because I honestly prefer not thinking about the trauma associated with this hospital stay.

So, I get asked this question a lot. I mean I’ve been entirely bedbound since early December so it makes sense that people wonder what

Because my parents both work full time and have four children (all one year apart), we had live-in nannies (au pairs) for many years when

Overall, I was a very active and healthy kid, but looking back, there are a few signs of hEDS.  My first “signs” of hEDS were

I know people can joke about brain fog, but I can personally say that it’s not only real but incredibly frustrating. Throughout the past two

Most of the time, I wish I could “abort” this body and hop into another one. But in full transparency, I just wanted to make

Remember how I mentioned doctors who are unfamiliar with your case can sometimes NOT believe what you’re telling them? Let’s revisit that topic since I

My most recent hospital visit left me with some anxiety. I have a “planner personality,” I want to know there is an actionable agenda in