Posted by Emily Shamash on February 05, 2020
Hi, my name is Ella and I am 12 years old. I am currently a 7th grader who likes spending time outdoors and hanging out with my friends and family.
When I was nine years old, I started feeling sick. I was nauseous all the time, had trouble eating without pain and was so tired I could barely get through the school day. By the time summer arrived, I couldn’t even walk an entire block without feeling ill. We didn’t know how serious it was until I was diagnosed with Crohn's disease at age 10. By then, I had stopped growing and was severely underweight. It was very difficult for me, especially in the beginning. The first rounds of medication were not successful; I couldn’t tolerate them. In August of 2017, I began receiving IV infusions (Remicade) at Yale New Haven Children’s Hospital. I am now in remission and feel great but going for IV infusions as often as every four weeks, as well as taking oral medications, is my new “normal” and the inspiration for an innovative project I’m working on.
When I first began the IV infusions, I felt scared, uncomfortable and alone. I did not know any other kids who were going through the same thing. I kept thinking of ways to make it easier and more comfortable for myself and others who could be experiencing similar discomforts. I love wearing cozy sweatshirts and I know that many other kids do too, especially in hospital settings. But, when you have an IV in your arm, you cannot wear long sleeves. The alternative is using a blanket, which constantly falls off, and if you or the nurses are trying to adjust the tubing or check the IV, it's impossible to keep the blanket on.
That’s when I first thought of the IV sweatshirt.
I wanted a way to wear my sweatshirts during my infusions to stay warm and comfortable. I started talking to my parents about the idea of an IV accessible sweatshirt a few months after I started receiving Remicade infusions. I decided to look online, thinking there must be someone who made this, hoping to purchase one for myself. To my surprise there wasn't anything quite like what I was envisioning.
So, I decided I wanted to make a sweatshirt, for kids getting IV infusions, that is comfortable, motivational, and most of all does not look like a hospital gown or medical-wear.
Not long after I came up with the idea, my mom noticed an email from ImproveCareNow (ICN) that mentioned a parent and patient innovation grant. We weren’t sure if the IV sweatshirt would be a match, but to our surprise, it was! We were awarded the grant and have been moving forward with the IV sweatshirt project ever since. We have partnered with the infusion center nurses at Yale New Haven Hospital and ICN to make the IV sweatshirt a reality.
Our project goal is to create a sample of the IV sweatshirt and gather data on how we can make it most useful for patients. Most of all, we want to create a more comfortable experience for IBD patients and help them to feel less alone and more inspired by their bravery and perseverance in spite of their struggles. We could not do this without the support of ICN and we are so grateful for this opportunity!
So far, we have done lots of planning on how this project will work. We decided to start the project by designing prototypes and testing them out with patients like me, who receive IV infusions often. In partnership with Yale New Haven Children’s Hospital, we will be gathering feedback on how the prototypes feel, work, and how they impact the infusion experience.
We are currently waiting for our sweatshirt prototypes to come in and have designed the surveys we intend to distribute. Stay tuned for the next update on our IV sweatshirt project! We hope to share a photo of the prototypes and developments in our process!
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