Kayla G’s Personal Story: Life with EDS
Hi! My name is Kayla Gonerway. I am 18 years old, and I have been sick since I was a baby, with minor issues doctors couldn’t explain, from shaking nonstop to having issues going to the bathroom. Until the 8th grade year, I got COVID-19 and started to have more health complications and never-ending ER and doctor visits. I got my first diagnosis and surgery my freshman year, which was the removal of my gallbaddler due to it only having working movement at 4% due to COVID-19 overworking my body, and my diagnosis of autonomic dysfunction. In hopes this would fix it all and we would be able to treat everything. Unfortunately, this was just the beginning of never-ending ER visits and over 17 different chronic diagnoses, from chronic fatigue to more major issues like gastroparesis and EDS (Ehlers-Danlos syndrome).
EDS will be a very big change for me; what I was able to do has become less and less. EDS makes joints and bones much more painful to move and functions while having this genetic condition. All of this makes my skin very flexible and stretchy, and makes it easy for me to break bones and tendons in my body that causes many of my genes and GI organs to not function correctly. I unfortunately had to quit sports and many other things throughout my life that I enjoy due to my body not being able to function. Doctors do not have many resources in understanding my condition or knowing how to treat it. Thankfully, I found a wonderful team of doctors at MUSC that works with patients who have eEDS and all of the conditions that come with it. The difficult part is that there is little to no funding for research or finding treatment options for building better life outcomes. And the reason why I am wanting to share my story is that on Tuesday, February 10, 2026, I was diagnosed with a very rare chronic condition that is only found in patients with EDS called Visceropotis, this causes all gi organs and other organs in my body to sag down to my pelvic floor when I am in any position other than laying down on my back. 2 other chronic diseases like SMAS and MALS are very similar and normally are all connected. All of these conditions are hard to diagnose and even harder to treat due to the complex levels that they are. Visceropotis is caused by my body using too much of my collagen genes in my body and weakening my blood vessels,causing them to sag my stomach and intensities to my colon. There are very few treatments to help this condition, and even more limited testing as well. Due to my organs falling below the position then they need to it has caused my colon to not function and has made using the bathroom almost impossible,which leaves very few options to help me use the bathroom, and not only does it make using the bathroom difficult. And even eating is something I have become very limited in; no matter what I eat or drink, how little or how big a meal is, or how I’m eating, lying down, sitting, or even standing, it is something I struggle with. I either throw it up right after trying to put it down, or I am lying on the floor, not being able to move. This is very difficult for someone who used to be a foodie and has lost their love and care for food over the years. Losing the power to eat more or things I enjoy is something no one should have to go through. Along with not being able to eat, feeding tube options are very limited for me because my organs not staying in place will cause major complications to the body which is something that makes this condition more difficult to deal with. I cannot gain weight and hold onto it very easily. I can lose weight and try to maintain it, but by doing that,I have to eat multiple times a day when I am only able to eat once a day on a regular basis.
I want to spread more awareness and my story to people so they can understand and hopefully open the world of medicine to help work in the right direction, finding better outcomes. It took me 5 years to get this diagnosis, and now I have an answer, but no answers at all, doctor after doctor who called me crazy, who told me it was just anxiety and IBS when it was a larger issue, and pictures they just did not want to handle. Finding out at 18 that your whole future on colleges , where I can live, and being told your dreams will be limited is something no one should have to go through nor hear. And this is why, for me, sharing my story is important and why I want to start to share the path that this condition will take me through and where it will lead me. Having awareness of conditions that affect people who don’t look like they are sick is very important because everyone’s struggles matter, and so do their stories.