Q: Please tell us a bit about yourself.
A: My name is Miranda. I'm a 19-year-old college student who loves to quilt, do pottery, read, and participate in adaptive sports, including mono skiing.
Q: What is your condition and how does it impact your daily life?
A: I have Ehlers Danlos syndrome, among other conditions. My disease affects my GI system and I can’t eat enough to sustain myself, so I am dependent on a feeding tube. This requires management multiple times a day like flushing the tube and refilling the formula bag. Also, due to my conditions, I can’t walk on my own. I can walk for short distances using platform crutches and AFO braces, but most of the time I use my wheelchair. My college campus is not super accessible, so I have to find routes that have ramps instead of stairs, which are not usually the most direct routes between classes.
Another one of my conditions causes intermittent dizzy spells and fainting, and all of my conditions cause pain. All of these things are pretty stressful and at times overwhelming. It is very isolating to be a chronically ill especially as a disabled college student because most of my peers are healthy and able bodied. I have never seen another student in a wheelchair or with a feeding tube on my campus. I have only seen one other student with a service dog.
Q: You mentioned that you do mono skiing. Do you have any particular inspirations?
A: I'm especially inspired by paralympic skiers like Shona Brownlee, who is known for her remarkable accomplishments in the world of adaptive skiing.
Q: How do you handle people's assumptions about your conditions?
A: People always make assumptions about my intelligence because of my visible disabilities. My wheelchair or crutches and braces are visible all the time, and my GJ tube is visible sticking out from under my shirt and going in to my backpack. Some people assume that because I am physically disabled, I am also intellectually disabled. Other people assume I can’t do things that I actually can do. I am very capable intellectually, and I am quite capable in my chair. My response to these people isn't anger or rejection, but rather openness to discussion. I am able to combat their assumptions by being very open with people and being willing to answer questions (within reason) about my disabilities.
Q: How has Alike helped you on your health journey?
A: I like the community that Alike gives me. I find comfort in connecting with individuals who share similar experiences, as we reassure each other before medical procedures and provide insights about various treatments. It's reassuring to know that others are going through similar unique situations, like living with a feeding tube.
Q: And to finish off on a fun note, what is your ultimate comfort food?
A: Although I a tube fed, I can eat a bit by mouth and my absolute go-to is Ben and Jerry's half baked ice cream!