The story of Kate
Hey! I’m Kate. I’m 16 years old from New Jersey and I have a condition called Ehlers Danlos Syndrome. EDS is a genetic condition that effects all of the connective tissues around your body. For me it caused a lot of problems. Since i was little, I was always hyper flexible! I was put into gymnastics at 9, which I grew to love so much. But since I was little and since I was a gymnast, we didn’t think much of my symptoms, until I was about 12. I started passing out a few times, having a crazy high heart rate, and getting super dizzy every time I would stand up. We searched for months for the cause and we just couldn’t find one, so we stopped searching. On August 12, 2019, things changed. I had what I thought was good poisoning or a stomach bug. Unfortunately, what was that turned into something much bigger. After a few months my “stomach bug” never went away. We knew something was wrong, so we saw a local GI doctor (Gastroenterologist). He couldn’t pinpoint what was wrong with me, but I was doing better so we decided it wasn’t worth it to keep going. On December 3, 2020, things decided to take a turn. I couldn’t eat without severe pain and nausea and was sent to an ER about an hour away. They gave me a referral to CHOP. At CHOP, I was given an NG tube to gain weight, and had a Gastric Emptying Scan (GES). I was diagnosed with Gastroparesis. I ended up doing well on my tube, and had an amazing summer. However on August 27, 2021, things took a turn for the worse. I couldn’t tolerate anything again. I lost 22 pounds! Although that was a terrible experience, It narrowed down our list. I was diagnosed with POTs (Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers Danlos Syndrome) In November 2021. I still have a way to go but I am so grateful for my amazing teams of doctors and the people who have been by my side through all of it. If you’re dealing with a rare condition, you are not alone!!!