I saw her photos on Instagram and was immediately drawn to them. We had a lot in common, it seemed. We both owned chocolate labradoodles, had anaphylactic allergies, and lived in the Carolinas. The more I got to “know” Brynn Duncan, however, I realized that while we did have things in common, our lives were nowhere near similar.
Her photos were captivating and touching
But equally heartbreaking
I started feeling sympathy for this girl I had never actually met, and only interacted with in the form of “likes” and Instagram comments. The more I read about her constant anaphylactic reactions, hospital visits, feeding tubes, and seizures, the more curious I became about what type of illness she was dealing with. As someone who has anaphylactic allergies and knows the physical, mental, and emotional toll they take on a person, I could hardly comprehend a disease that causes spontaneous anaphylaxis, sometimes several times per day.
I reached out to Brynn in a private message asking if she would be interested in letting me interview her about her condition, which I learned was called Mast Cell Disease. She eagerly agreed in hopes of spreading awareness about this chronic, life-threatening, and currently incurable disease.
I expected our interview to be relatively short, straightforward, and purely informational, but five minutes into our first conversation, I knew it was going to be none of the above. Brynn Duncan would be one of the most interesting influential people I had the honor of meeting. I learned so much from her.
Brynn’s stories and perspective had a profound and what I’m sure will be a lifelong impact on me. By the end of our multiple conversations, which she squeezed in between Emergency Room visits and feeding tube surgeries, I was just as fascinated with her as a person as I was about the actual rare disease itself, which only about 150,000 people have been diagnosed with to date. Her overwhelming optimism and acceptance of a tragic, life-altering disease was inspiring, to say the least.
From her hospital bed, Brynn smiled and giggled as we exchanged anaphylaxis stories and food allergy woes over video chat. I feel honored to have been given a glimpse into the world of Brynn Duncan, a young woman whose disease has limited her physically, but has empowered her mentally and spiritually in unimaginable ways.
Can you familiarize us with Mast Cell Disease (MCD)?
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 being a newborn but it didn’t get really bad until I was 16 years old, and I’m 20 now. We were actively searching for a diagnosis for 7 years. It’s one of those things not many people really know about yet, and we’re also finding out it’s not as rare as people thought. People just go undiagnosed for a very long time.
My form of Mast Cell Disease is called Mast Cell Activation Syndrome (MCAS). 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.
Mast Cell Disease has also caused me to have Dystonia, which is basically where I will have convulsions and my joints will pop out of place and get frozen. It looks like a seizure, but it’s not exactly a seizure. It’s almost worse because you’re conscious and you realize what is happening, you’re fully aware. It is really scary to watch and I’ve had many injuries caused by it.
As of today, what are your allergies?
All antibiotics I’ve tried except Rocephin
Almost every vegetable, all nuts, almost every fruit, dairy, soy, corn, including corn syrup, we’re not sure about bread. I am allergic to yeast, so the wheat itself isn’t a problem but the yeast is.
All foods that are high histamine are problems for me.
Perfumes and other scented products
(Almost all of these are anaphylactic)
Are you terrified to eat?
Hah, well 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 could eat by mouth if I really wanted to, but I’m relying on my tube right now.
Can you have an allergic reaction to feeding tube formula?
Yes, especially because I’m one of the more severe cases of MCAS that doctors have seen. 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.
I have had one anaphylactic reaction since being on the pump but it wasn’t my throat closing so I didn’t even recognize the symptoms at first. My heart rate was just at 140 for close to 2 hours, it was crazy. I ended up passing out and having a seizure.
Do any of your family members have it, is it hereditary?
Umm, I don’t think so. We have family members who have seasonal allergies but nobody has been like me. I have an 18 year old sister and 14 year old brother, and neither have it. As a baby I was constantly crying and unhappy. When my sister was born she didn’t cry and they thought she was the one that had a problem– it was actually me! They were just used to me crying so much that they thought something was wrong with her.
How does your family support you?
I’m blessed to have very supportive family, they’re always doing anything they can to make situations more comfortable for me and help me do things I can’t do on my own. Whether it’s keeping me entertained at the hospital or coming to the mast cell disease conference. It was crazy, everywhere you looked people were doing EpiPen shots and drinking Benadryl straight from the bottle! All of my sister’s friends came to support me at the conference, it was great.
My family members are probably always on edge, but they are always there for me and are strong. My mom was so relaxed when I got my feeding tube because it meant I would stop eating and having anaphylaxis. She would be so anxious sitting at the dinner table when I would eat food. I think being the parent of a kid with special needs is probably the most difficult thing there is.
Can you travel?
Traveling is very difficult. Perfumes are hard to be around and can cause anaphylaxis, smoke can too. Anything can for me! Planes are kind of risky but I load up on Benadryl and my dog Moose flew with me last time I went to Boston to see my doctor. The last vacation I went on was Disney World over Christmas. I spent a lot of time at the rental house because I was sick and I had a seizure on Christmas day.You pretty much just have a good day or bad day, and you know right when you wake up which one it’s going to be.
What does a good day look like for you?
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. I think the last good day I had I went to see my grandfather who is in the hospital and one of the nurses saw my mom and said “oh what room is Brynn in?!” She didn’t know we were just there to see him!
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. By the time I was 17, I had earned my 3rd degree black belt and started training to become a Taekwondo instructor. Both of my siblings are black belts as well and I honestly believe that the life lessons we learned in Taekwondo have helped us more than anything when it comes to battling chronic illness.
My family has been fighting with me through it all, and I would be lost without them.
And what does a bad day look like for you?
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. Sometimes I’ll have anaphylaxis but I’m so used to it that I’ll say “oh, I don’t need to go to the ER!” The more you learn to tolerate it and how to control it, the easier it is to avoid the hospital.
I cannot imagine being in anaphylactic shock and staying as calm as you seem to. That is incredible.
It never stops being scary, but I have gotten to the point where I don’t panic anymore. I know that the medicine will work, and I will get through it. I just have to get through it and be patient.
Are there any doctors you see now who don’t believe in your diagnosis because of its rarity and sometimes bizarre symptoms?
I have had some instances of that. Awhile back in the ER a doctor said “you don’t have mast cell because your blood work doesn’t make sense for that.” Meanwhile I’m seeing two of the top doctors in the country for this disease so they probably know what they’re talking about.
You know so much about the disease, and seem to know a lot about health and medicine in general. It’s obviously something you’re passionate about. Have you ever thought about going to medical school?
Actually, yes! I was in a biomed honors program at the career center [in high school] for 3 years before they kicked me out because I was missing labs… because I was in the hospital so often. I wanted to be a doctor. Then everything got crazy, but I did know a lot about the human body before I was diagnosed. I think that really helped me to learn more about my disease and understand it.
There are so many people who have diseases and just basically know the name of their disease and not the details of it! It’s good to know more about it, and figure out exactly why you have it.
Is medical school still a dream of yours for the future?
I think it’s something that if I get to a stable point physically, I would love to do. As far as right now goes, I have kept myself from getting my hopes up. I’d also love to get to the point where I can adopt a child with special needs. I know that sounds crazy with all I have going on, but I really want to! I went to school with kids who had Down syndrome and they were my favorite people. So that is a big hope of mine– I’d love to adopt someone with Down syndrome.
What do you think is the most difficult part of having Mast Cell Disease?
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! In the early stages, I couldn’t figure out why I had to be admitted [to the hospital], but after I got to my room I met someone who I was able to help because she has weird health things going on too.
I’m supposed to help people, and that feels really good.
How long did it take you to reach that level of acceptance?
Awhile (laughs). 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. The day I had my first feeding tube I wanted to pull it out, I hated it. If I hadn’t met my friends who told me it will get better I would have pulled it out. But I didn’t, and now I can help other people do the same.
I think everything plays out the way it’s supposed to. It’s easier to accept when I am able to help people. That is what is most important to me, even just being able to help one person to a diagnosis. I went seven years without one and it makes it worth it to help others.Everyone has something they have to overcome; Mast Cell Disease is just mine.
What are the specific challenges of having an invisible illness?
Probably one of the hardest parts is for teenagers like me. When I was in school I was missing so much class and my teachers didn’t believe that I was actually sick. That is probably the biggest thing. Also, finding a diagnosis when you don’t look sick.
One of the few times I actually looked bad was when I was in the ICU. I can look fine but when you take my vitals they will be off the chart crazy. People have even thought I was a hypochondriac, and that is really difficult. Nobody chooses to have this disease.
What is your prognosis? Do doctors see your disease as something that will improve over time, worsen, or are they not sure?
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 miracle drug for people with Mast Cell Disease. It just takes one amazing thing to happen before everything changes and falls into place.
Another favorite quote of mine is, “the reason people find it so hard to be happy is because they see the past worse than it was, and the future less resolved than it will be.” When I was diagnosed I thought my life was over, but there is good coming out of it. You just have to find it.
I’m baffled because I feel like I have a pretty extensive knowledge of health conditions, yet I’ve never heard of Mast Cell Disease until talking to you. I’ve asked several friends in the medical field, and none of them are familiar with it either. Why do you think more people aren’t aware of it?
I think it’s so unheard of because there are so many different factors and organ systems involved and affected. Doctors will find multiple different issues going on and organs having problems, but they can’t pinpoint a root cause. They don’t know what is causing it.
How many hospital visits do you average per year?
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 8 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.
In 2012, I was passing out every few seconds; sometimes it would be 40 times per day. We attributed it to the POTS I also have, but doctors decided to look at my adrenal glands. They completely stopped functioning from getting too many rounds of steroids. I was getting 125 mg of steroids every single hospital admission and they basically killed my adrenal glands. Because I was getting the steroids at the hospital, my body stopped producing the “steroid” in my body naturally. So now I’m steroid dependent, and I have been slowly tapering off. There was one point where I was on 80mg every day but now I’m on smaller dosages. I’ve never been able to get completely off of them though because every time I have an anaphylactic reaction, they have to give them to me again.
You mentioned you have POTS? What is that?
POTS stands for Postural orthostatic tachycardia syndrome. It is an autonomic dysfunction, and it means with change in position your heart rate increases significantly so I can be lying flat and my heart rate will be that of someone who has just run a marathon. Right now I’m not on anything to treat it because I was allergic to the medication, but they also treat it with lots of IV fluids so that’s what I’m doing now.
Have you ever had to seek counseling to deal with MCD, and your other medical conditions? It must take an emotional toll on you.
It does take an emotional toll, but thankfully for me, I guess my perspective changed so much. I don’t want to say it’s a “screw it” mentality, but I do have the mentality that everything is going to happen the way it’s supposed to. My doctors would send me to a counselor, and the counselors all said “I don’t think she needs to come back. Call me if you need me.” I’ve been able to keep it from controlling me, even though it’s hard.
You just amaze me. On your own you have been able to get to a point of acceptance and optimism and hope that took me years and hundreds of dollars in therapy bills to achieve! And your medical issues are obviously much more serious than mine. So, you’re over the point of feeling sorry for yourself?
Thank you. And, yes. I definitely have my days, but most of the time not. I was so oblivious to things going on in the world, but since my diagnosis I’ve had such a perspective shift. This disease, It’s been a really good thing to open my eyes about what others are dealing with.
Speaking with you and seeing your pictures on Instagram has given me quite a bit of perspective, you deal with so much on a daily basis that many people never have to deal with in an entire lifetime. How do you stay positive, especially when you see people complaining about trivial things like a rainy day ruining plans, or having a cold?
It depends on 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 finding 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 find humor in those situations too. When I got my leg braces, we went to the movies and I was hoping I didn’t see anyone I knew, and my sister said “why are you embarrassed? Do you not realize you have cool bionic legs??” I realized, yeah, that’s right! I then started humming We’re Off to See the Wizard and was calling myself the tin man!
I love the fact that you have a chocolate Labradoodle as a service dog! Tell us about your companion.
Moose is basically the best thing that has ever happened to me. The story behind it is pretty cool. After our previous dog died and I was homebound, I started begging for a dog. I would go through Google images and had complete puppy fever. I am allergic to most animals, but Labradoodles are allergen friendly and I told my parents I really wanted one.
My mom called around to different Labradoodle breeders, you can’t typically rescue them if you want to make sure it’s going to be 100% hypoallergenic. A couple had gotten a dog and didn’t want him anymore, so my parents got him and surprised me, he was 10 weeks old when he came home.
Didn’t want him anymore!? That’s so odd, but it worked out for you I guess!
I know! I honestly think he was just supposed to be with me. Everything changed when I got him, I was so much happier. When I got Moose, I became more outspoken about the disease, he gave me confidence to be myself, and he gave me peace of mind. I knew he was always going to be there in case something happened.
When did Moose start alerting to your medical issues?
We don’t exactly know when he started alerting because we are stupid humans, we didn’t know what he was doing at first when he was alerting! He started alerting probably around 4 months old, and we didn’t even know what he was doing, he just started doing it on his own.
When I started going downhill, he would go crazy and run around, bouncing off the walls. It was as soon as I would start getting bad, his mood changed. One time Moose kept pacing between me and my siblings, and he kept barking and backing up in my direction so my brother said to him, “what do you want??” He walked over to Moose and Moose immediately calmed down. When my brother walked away he got upset again and he started pulling on his pant leg to come back to me. He wanted a human to be with me, to sit by me to make sure I was okay.
We figured out he was really special when I passed out once and my family was on the other side of the house. Moose went to my mom and brought her to me in the middle of the hallway where I was lying unconscious. It was then that we decided to do service dog training with him to work on his dog manners, but he did initially start alerting on his own.
Now he will alert me by laying on me or gluing himself to me when I’m not doing well. Even when paramedics are there they have put him in another room because he won’t get off of me.
Have you ever sought alternative medicine or holistic treatment to help with Mast Cell Disease?
We have! For me, it meant going on the low histamine diet. Unfortunately it didn’t do much because of the severity of my case but I’ve heard it has done wonders for other people!
What advice would you give to someone who is struggling, whether it’s with a mental, emotional, or physical disease?
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. That is the biggest piece of advice I could give—besides not letting yourself get caught up in the disease. I know for awhile, 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.
Don’t let your illness define you. But at the same time, I know I wouldn’t be me without the disease because of how much it has changed me. And I mean that in a good way. Of course I hate the disease, but I also think it may be the best thing that has ever happened to me. I was so oblivious before I got sick, I didn’t realize the types of things people deal with. A lot of people think the world revolves around them, and they forget what is going on outside of their lives.
Some people get offended when you say “it could be worse”, but it really could be. For example, I have this disease but I also live in a great city with a really good hospital where I’m treated. I’m so fortunate! That state of mind helps me. I have also met SO many people from Instagram alone, I’ve made so many wonderful friends. I wouldn’t have Moose if I didn’t have this disease.It has changed me in more good ways than bad.
If someone is searching for a diagnosis for their medical issues and is wondering about Mast Cell Disease, what should they be on the lookout for?
Weird rashes, spontaneous allergic reactions, low blood pressure, high blood pressure. If you have really bizarre symptoms no matter what they are, just look into MCD. It’s a blood disorder so it causes issues with every body system, I think that’s why it is so hard to diagnose.
They were able to confirm my Mast Cell Activation Syndrome by blood work. It’s a complete specialized testing, if you don’t go to a MCD specialist you can’t be guaranteed it’s going to be done correctly. Small things, like if the blood isn’t sent on the right amount of ice can make your test results skewed. They diagnosed me by taking blood every single hour when I was in the hospital because my levels can go from normal to off the charts high, to normal again in just 45 minutes. You have to catch it in the peak of a reaction or else you won’t know what’s going on. This disease comes and goes in flares. I’ve had symptoms from birth but I’d go years seemingly healthy, then get sick again. Each flare lasts longer and is worse than the previous time.
What I learned from Brynn is that you can always choose to be happy and appreciate your life, even if it means completely reinventing it and letting go of what you thought it was going to look like. Brynn learned to love her disease, something that was surely no small feat. What can you learn to love in your own life?
I think it’s an important thing to take note of your struggles and learn from them, whether they are physical, emotional, or mental. They can either define you in a negative way, or you can grow from them. Brynn chose the latter. We all gain strength from each other, and realizing how fortunate we are to have the lives we have is key to happiness and acceptance.
Thank you so much to Brynn Duncan for spending hours texting, calling, emailing, and video chatting with me. The impact you have made on me, and countless others, is monumental, and I look forward to living my life now with “Brynn colored glasses.”
Follow Brynn on Instagram
YouTube Video, “Not Your Average Moose (Brynn’s Story)” made by Brynn Duncan
Check out her website, it’s currently under construction but will be up and running soon!