My name is Nitara, I’m 14 years old and I’m in 8th grade. My hobbies are playing violin and photography. I’m also a big reader, as I love challenging myself to read massive novels. One of my role models is Lindsey Stirling, a famous violinist. I saw her on YouTube a few years ago and was instantly drawn into her music. She’s the one who inspired me to pick up the violin, a passion I’ve been pursuing ever since I heard her music!
When I get older, I want to be a surgeon because the idea of making a positive difference in someone’s life has always appealed to me. I’m also really fascinated with how the human body works.
My Medical Conditions
I have a connective tissue disorder called Ehlers-Danlos. It causes people to have overly flexible joints, and skin that bruises easily because the collagen in their body is not structured.
When I was a baby, I had a chronic immune condition called Eosinophilic Esophagitis that gave me an inflamed esophagus. I had a hard time swallowing food and it caused me to vomit quite a bit. To eat, I had to use a feeding tube that put formula directly into my stomach, as well as follow a special diet. When I was in school, it was hard for me to fit in with my kindergarten classmates since they could eat so much more than I could. I outgrew that condition, but now the doctors think that maybe part of the reason I couldn’t hold a lot in my stomach was my connective tissue disorder.
Since it was such a big part of my early childhood, I have a lot of memories about my medical issues. The most memorable and earliest I can think of would have to be receiving a beanie baby from a nurse after an endoscopy. I had quite a few of those during my early years.
The biggest challenge with having a connective tissue disorder is explaining to the school nurse how I dislocated my knee. Often times, they don’t believe me and will send me back to class with nothing but an ice pack. Another challenge is dealing with the fact that I can’t engage in sports. Before I knew much about my disorder, I was an active kid and was very proud of the fact that I was the only girl on my basketball team. After dislocating my knee a number of times while playing, I decided it was best to drop out and haven’t engaged in sports ever since.
I’ve had to get used to wearing a knee brace at school everyday. It can be quite annoying, especially in the summer when the weather’s hot and I’m left feeling sweaty with a clunky brace on. When walking between classes, I’ll have to stop several times to adjust it. I also have to deal with loads of questions from my classmates, and explaining my situation can get very tiresome after a while. As annoying as it can be, I have to remind myself that it’s for the best and that I would much rather wear a brace than dislocate my knee.
Something else that I have to adjust to is getting knee surgeries. The first surgery I had happened when I was in fifth grade. I made the mistake of getting it done in the middle of the school year. So, for six weeks, I had to wheel myself around the school campus and take the wheelchair bus to school everyday. It was really hard to focus on schoolwork when I was trying to recover. When that surgery failed, I decided to get the next surgery in summer break so I could rest without having to worry about grades. This summer will be my third surgery.
I don’t like telling my classmates about my connective tissue disorder because it draws attention to myself. Usually they will approach me first by asking about my surgery scar. It’s not surprising that people ask about it so often. I simply tell them that it’s a connective tissue disorder that causes my joints to be looser than most peoples’ and so my knees are prone to dislocations. I try to keep it short, but when I tell my friends, I will go into more detail.
I worry about when I’m older. My knees randomly dislocate. I’ve always been afraid of walking into a job interview when I’m older and dislocating my knee. It’s a situation I hope to never run into. If I’m not a surgeon, I’d like to pursue some other job in the medical field. If I ever want to be a nurse, I’ll never be able to because of the physical strain it puts on your body. My knees would give out for sure.
I definitely think that having Ehlers Danlos has made me stronger. During the hard parts of my surgery recovery I’d have to remind myself that the situation could be worse, and I’d think about all the things I was grateful for like how lucky I was to have such a supportive family, and how great it is that we have good insurance!
If a kid finds out they have a connective tissue disorder, I would tell them to look at their situation in a positive light. Having a connective tissue disorder, awful as it may seem, is a part of what makes them unique.