Adrian Van Stee is a film and marketing major at Calvin University. He has two sisters, one older, and one younger. Adrian loves photography and videography. He blurs the lines between job and hobby by working as a freelance photographer. He is also on Calvin’s improv team and enjoys watching and performing with Calvin Theater Company. Adrian has a rare disease called spherocytosis. He considers himself lucky because it does not have a significant impact on his daily life. He thinks it is important for people to understand that while not all rare diseases cause constant struggles, they are still significant. 1 in 10 people has some sort of rare disease, so it is something that we should all be conscious of.
Q: Why did you agree to be a part of this project? Why is this important to you?
A: I agreed to be a part of this project for two reasons. First, I support the idea of bringing awareness to rare diseases. I am so blessed to have a disorder that I can almost completely ignore, but I know that for others that is not the case. Every year when I go in for a blood test I am reminded of how lucky I am that my blood disorder is such a small part of my life because for many that’s not the case. Anemia and lots of other rare diseases/disorders can absolutely be life-changing and a constant battle for many people. We shouldn’t treat people with rare diseases any differently because of their conditions, but we should be understanding, sensitive, and supportive. The first step to that is awareness.
The second reason is similar but takes a different angle. Not all rare diseases cause constant struggles but that doesn’t make them unimportant. Though it’s extremely unlikely, at any time my body could stop being able to produce enough red blood cells and I would be in desperate need of a blood transfusion. In that situation, my chances of surviving after losing consciousness would be greatly improved if someone were able to identify what was happening. I’m not saying that everyone should be able to immediately identify each and every type of rare disease and disorder that someone could have, but 1 in 10 people has some sort of rare disease, so it should be something that we are conscious of.
Q: Tell me more about your rare disease and how you would define it?
A: I have spherocytosis which causes me to have spherocytic anemia. So, to start, spherocytosis is a disorder that affects my red blood cells. There’s a whole lot of science behind it that to be honest not even I understand, but basically my red blood cells are spheres instead of the normal disk shape. This causes me to have spherocytic anemia which means that I don’t always have enough red blood cells. That can lead to all sorts of issues like fatigue, shortness of breath, or in extreme cases, fainting.
Q: What was your diagnoses process like? Did you ever get misdiagnosed?
A: When I was born, I was really jaundiced. I was basically yellow, so they kept me under a heated blanket for a few days and that seemed to fix things. The doctors thought something might be up but lots of babies are born jaundiced and have no other issues, so I went home, and things were fine. When I was around 3, I woke up one morning and I couldn’t walk. To be honest, I don’t really remember what it felt like, I just remember a) being really confused as to why my legs suddenly were refusing to operate and b) absolutely loving all the attention I was getting. To this day I’m not sure what was going on with my legs. I was living in England at the time and the doctors said it might be something called “irritable hip syndrome” which doesn’t seem to be a thing in the states. Anyway, they ran some blood tests and saw that I was anemic and that’s how I was diagnosed.
Q: What does daily life look like for you?
A: Let me start by saying that I am very lucky to have anemia that isn’t too bad. For some people, it’s a hugely influential part of their life that they must spend a lot of time worrying about. For me, it doesn’t have a big effect on my day to day life. I wake up, I go to class, maybe do a photoshoot or two, do my homework, and go to bed. The only ways that my anemia affects my day are that I have to take folic acid in the morning to help my body make more blood cells and I also tend to get tired very easily.
Q: What is the hardest part about your rare disease?
A: The hardest part of spherocytosis isn’t actually the disorder itself but rather the side effects. For example, when I get sick, I tend to get whatever is going around worse and longer than most people because my body has to work so hard to fight it. My immune system is weaker than most people’s and I get tired a lot more easily. My spherocytosis can also lead to bigger medical problems. I’m happy to say that I have been mostly free of major problems caused by anemia, but I did have gall stones in middle school, causing me tons of pain and a lot of missed school. I’ll probably have periodic gall stone attacks for the rest of my life. It’s not life-threatening but it hurts a lot.
Q: What do you want people to know about you beyond your rare disease?
A: Honestly, I think when it comes to my anemia, I want people to know that I’m ok and it’s incredibly unlikely that it will kill me. Often when people find out they start getting worried every time I get tired and while I appreciate the concern, the reality is I’m not dying, and I probably just need to sleep because I’m a college student.
Q: What is your career or what do you hope to be in the future?
A: I’m a double major in film and marketing so I’m hoping to be able to do combination of those two things. Right now, I think that will be by either opening a production company and doing freelance work for commercial clients or by working for a marketing firm doing in-house production. That being said, I am a freshman so obviously that could change. All I know for sure is that I want to do something creatively based.