“My name is Emily Parks and I was born with a rare genetic mutation that affected the development of smooth muscle. This primarily changed my GI system, leading to Chronic Intestinal Pseudo-Obstruction, Short Bowel Syndrome, and Gastroparesis. In short, the muscles in my GI system were too weak to digest and absorb nutrition so I was put on Parenteral Nutrition, or IV nutrition, to meet my nutritional needs. PN is a great therapy and worked for me for over 20 years but overtime I developed multiple secondary complications to it, such as frequent central line infections, poor vascular access, and liver disease.
Because of this, I underwent an intestinal transplant in Dec 2020. 2021 was mostly recovery along with some additional surgeries but I’m thankful that overall I did really really well and am happily off PN and all IV medications, exclusively taking oral medications. It’s the first time in 22 years that I don’t have a central line, g-tube, or rely on IV medications! It’s kind of surreal!
One of the things I am most passionate about is medical trauma. I’ve accumulated a lot, especially in my childhood, due to being in and out of the hospital and my life being interrupted so often due to illness. Don’t get me wrong, I’ve had some amazing nurses, superstar doctors, and other great hospital experiences but I’ve also been through medical gaslighting, patient burnout, medical PTSD, and more.
I believe the US has good medicine, but could improve in how we deliver medicine. More patient-centered care, more trauma informed care, more bedside manner training, more healthcare literacy, more conscious communication and provider/patient collaboration. For this reason, I started an organization called Pissed Off Patients,or POP!, which focuses on bringing awareness to medical PTSD. I currently host biweekly discussion groups on all things medical PTSD related, such as defining medical gaslighting, symptoms of medical PTSD, and how to advocate for yourself. We have a lot of exciting projects coming down the pipeline, such as a resource guide, research, and informational video, and a module for providers! We can be found at popmedicalptsd.org.”
If you are interested in being featured as a Weekly Warrior, please contact Stacey Haines at Stacey.Haines@rarepatientvoice.com.
