THE PATIENT VOICE

Welcome to Issue 8!

Imagine not being able to enjoy Thanksgiving dinner, or a girl’s night out, or a special meal with loved ones. Imagine feeling pain, nausea, and bloating every time you try to eat something.

People with digestive tract paralysis (DTP) live with problems just like this every day. But it’s much worse than that. Members of the DTP community sit helplessly by as friends literally die of malnutrition and starvation. 

Patients Rising, as I’m sure you know by now, strives to put the voice of patients into any and every healthcare conversation, and makes sure patients-in-need get the treatments their medical providers say they need, when they need them. That’s why we’ve partnered with G-PACT, the longest running patient support group for the digestive tract paralysis community, to try to figure out what is getting in the way of getting the treatments they need. Keep an eye out for our latest article summarizing the findings from a survey we created with G-PACT to do exactly that. 

Our “Created by Patients” features Cheyanne Perry, a DTP patient, who also wrote an article with us, which you can find in the Voices of Value section below. 

We want to know what YOUR obstacles to accessing effective care are. 

-- Terry

Cheyanne Perry
Artistic statement

“I once spent 8 months out of the year in the hospital battling complications from my Ehlers Danlos Syndrome. It’s a miracle I didn’t go completely insane. 

I had quite a bit of time on my hands. I decided to put it to good use. I taught myself knitting. I quickly accumulated beanies, scarves, blankets, and headbands. Eventually, I created my Etsy shop, HospitalRoundKnits, to sell handmade knitted products. The shop’s name was inspired by a common knitting term, “in the round,” along with doctors making their rounds in the hospital where I originally learned to knit. 

What began as a hobby to occupy my boredom transformed into a passion for which I am forever grateful.”
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Cheyanne has written an article with Patients Rising entitled “Coping with the Fear of Digestive Tract Paralysis” and is very active as an advocate for chronic illness. You can find her on Instagram at https://www.instagram.com/hospitalprncss/.