Unintended consequences of a Treatment for Rare Disease
Diseases
Gastrointestinal Disease, Rare Disease
Issues and Challenges
Joshua has encountered: Discrimination (nonmedical)
My Story
My name is Joshua Bastean, I come from a small town with around 2,000 people and go to a small school. From the outside today I may look like a normal person. But on the inside, I have been dealing with a condition for 10 years of my life.
I have a rare disease called Eosinophilic Esophagitis (EoE). This autoimmune condition causes eosinophils (a type of white blood cell) to build up in my Esophagus making it difficult to swallow food and if untreated, impossible. However, the treatment that I obtained from 3rd grade to 10th grade had an unknown side effect due to how new the disease was. It stunted my growth. Although my voice has deepened since getting off of that medication, not only my height has been permanently affected, my social life was as well.
Throughout all of middle school, every one in my small class was developing and going through puberty while I was stuck. My height started to fall behind along with my voice. I looked and sounded like I was always 2-3 grades below my actual age. This made it really difficult for me to make new friends and everyone thought of me as annoying. Even now I still feel some of the effects of my medication. I will always be 2-3 inches shorter than the height I should have been and people still think I am either a sophomore or a junior in high school while I am actually a senior.
My Motivation and Inspiration
My motivation to continue forward is simple, I want to help people.
My current condition requires a painful injection every 2 weeks which is difficult as needles are my biggest fear. Every day I wake up and know that there is some kid that is younger than me with EoE getting these injections. I don't want other people to have to go through I went through anymore. This is why I want to start advocating to help people. I have created my own 501(c)3 non profit. This nonprofit is called Pics4EoE (pics4eoe.org) and on that website I showcase the photos that I have taken from across the world and give them out for free. In return, all I ask for is to donate if you can! Thank you for your time and reading my story. - Joshua
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