Brynn Duncan joyfully lives — and almost dies — every day. When I met her on Instagram, her photos were captivating and touching, but equally heartbreaking. Twenty-year-old Brynn suffers from a disease that could debilitate most people, but Brynn finds healing and purpose in educating others about her life-threatening and incurable illness called mast cell disease
Q: Can you familiarize us with MCD?
A: Mast cells are cells in our blood that are responsible for histamines, like what causes allergic reactions and what happens when we get mosquito bites. In my body, they are constantly releasing so it’s like I’m having an allergic reaction all the time. That’s the simplest way to put it. I’ve had symptoms since birth, but it didn’t get really bad until I was 16 years old. We were actively searching for a diagnosis for seven years.
Sometimes with this form, people think they just have really severe allergies, and it affects every body system because it’s technically classified as a blood disorder. The most difficult part about it is that your allergies change. One day a safe food could be something that causes anaphylaxis the next. You just never know.
Q: Are you terrified to eat?
A: I have a very small list of safe foods. I’m actually on a special formula to get all my nutrition through a feeding tube. So right now, I’m not eating. I’m actually on a 24/7 Benadryl pump that was started after I spent 11 days in the ICU. It’s a trial procedure, but after 24 hours on the Benadryl pump, my seizures stopped and my anaphylaxis went away.
Q: What does a good day look like for you?
A: A good day would probably be going downstairs (giggles) or going to the movies. I don’t think I’ve been downstairs in four or five days now because I have had no energy and haven’t eaten in days.
A good day also means no seizures, no fainting, and no anaphylaxis. It’s crazy to think about how much your life can change in such a short amount of time! I used to be really active in martial arts — my siblings and I basically grew up in the Taekwondo academy. I started when I was nine years old and earned my first black belt at the age of eleven.
Q: What does a bad day look like for you?
A: A bad day would be a family member having to keep their eyes on me 24/7. Fainting, needing help to do simple things like go to the bathroom. Doing everything possible to avoid the hospital.
Q: What do you think is the most difficult part of having mast cell disease?
A: You have it for life, so people have to figure out how their lives are going to be now that they have this diagnosis. One of my favorite quotes is by Mark Twain, “The two most important days in your life are the day you are born and the day you find out why.” I think I was supposed to have this disease so I can help other people. I’ve even been able to lead a few people to diagnosis.
Q: What is your prognosis?
A: That’s something nobody knows. As of right now I’m one of the sicker patients that the specialists have seen. But who knows, they may come out with a miracle drug for people with mast cell disease. It just takes one amazing thing to happen before everything changes and falls into place.
Q: How many hospital visits do you average per year?
A: In 2012 I had 30 hospital admissions, and several ER visits on top of that. Sometimes one visit turned out to be a two week stay. In 2013, I had eight admissions which was a huge difference. This year, I’ve had three so far. The difference between 2012 and 2013 was that I started seeing mast cell specialists. Those two doctors got me to a more controlled point.
Q: How do you stay positive, especially when you see people complaining about trivial things like a rainy day ruining plans, or having a cold?
A: It depends on the day, really. For example, everyone was complaining about cabin fever with the snow recently, and I was thinking “if only they knew.” But at the same time, they don’t really know anything different. I used to be the same way so I can’t blame them. A big part of it for me is just finding humor where I can.
I like rediscovering pictures that I took on my phone when I was drugged in the hospital and don’t remember taking them — that is really funny to me. My family helps me seek out humor in those situations, too.
Q: How long did it take you to reach that level of acceptance?
A: I really figured it out last year. I met people on Instagram who are also sick teenagers. I realized that the people who have become my best friends I would never have met if it weren’t for this disease. Everyone has something they have to overcome — mast cell disease is just mine.
Q: What advice would you give to someone who is struggling, whether it’s with a mental, emotional, or physical disease?
A: The first thing I would recommend is reaching out to meet other people like you. It helps you realize you’re not alone and there are other people like you. I know for a while, everything about my life was mast cell disease. I would introduce myself and immediately say “I’m Brynn. I have mast cell disease.” But now I’m just Brynn. When you’re dealing with chronic illness, it’s easy to get caught up in everything negative going on, and people forget there is life outside of what they’re battling.
Click here to read the extended interview with Brynn Duncan.
Follow Brynn on Instagram.
Brynn’s personal blog.