Living With Mast Cell Activation Syndrome: Finding Confidence, Purpose and Possibility

For Ashley Baumann, living with mast cell activation syndrome (MCAS) means navigating a world where her condition is sometimes misunderstood.

During her childhood and high school years living in Seattle, Ashley had symptoms that were hard for even her to explain. She regularly developed hives on her skin, stomach problems, mouth sores, fatigue, and other symptoms. Others in her life did not fully understand how seriously the symptoms affected her. Or they dismissed them as something minor.

Ashley learned to live with a body that would often change from one day to the next. But in her freshman year in college in 2023, her symptoms became so severe that she spent much of the spring semester in bed.

Ashley’s MCAS diagnosis that same year was a critical piece of her health puzzle. She also lives with chronic urticaria (hives), postural orthostatic tachycardia syndrome (POTS), an autonomic nervous system disorder that can cause lightheadedness and a racing heart, and Hypermobile Ehlers-Danlos Syndrome (hEDS), a connective tissue condition that can cause joint hypermobility and chronic joint pain.

The relief of knowing what was causing her symptoms opened the door to a new set of challenges. She learned to manage multiple conditions and complex treatments. She adapted to the uncertainty that comes with a chronic illness and the risk of anaphylaxis.

Now 22, Ashley works as a summer camp director while attending graduate school. She wants to become a school counselor for middle and high schoolers. Meantime, she travels regularly, spends time with friends, and advocates for others living with chronic illnesses.

Ashley has found purpose in sharing her experiences. As an advocate, she hopes that talking openly about MCAS supports greater understanding of the disease.

In a Q&A interview, Ashley talks with Allergy & Asthma Network about her healthcare journey with mast cell disease. She discusses how her experiences have shaped how she sees herself and the possibilities for her future.

Managing Chronic Diseases and Daily Life

Q: How do you manage your multiple chronic diseases?

Ashley: I am in a place today where my symptoms are well-managed. I have come a really long way. I am able to work a job that involves being around lots of kids who carry lots of germs. As someone who is dealing with issues with the immune system, that’s always a concern.

Two years ago, when my symptoms were flaring, I experienced a lot of stomach aches. I had rashes from chronic urticaria. Back then I would go outside and just break out in hives. I had a lot of fatigue with MCAS. That has gotten better with medication and learning how to balance energy. I ask myself, ‘Is this something I really need to use my energy to do, or is this something that can wait until tomorrow?’

Hypermobile Ehlers-Danlos Syndrome plays into my MCAS symptoms. It causes severe joint pain. These symptoms get worse during an MCAS flare. It feels like my entire body is in a state of inflammation. So that is hard.

Going about your daily life with joint pain is very difficult, especially since I’m only 22 years old. I can’t do the same things that my peers are doing. I grew up a competitive gymnast, so I went from 100 to 0 in terms of physical activity. And I had to learn how to balance that, too.

Now I have gotten to the point where I can do a lot more with my life. This is exciting but it’s also nerve-wracking. You wonder, ‘Will the rug be taken out underneath my feet?’ That’s what happened to me three years ago. I am always very cautious, for sure.

I always carry epinephrine, no matter where I am, in case I have a severe allergic reaction and my symptoms get bad. My family and friends know where I keep it. I have a med bag that goes with me everywhere. It has all my medications in it, it has antihistamines in it, so I am prepared if I do react.

The Long Road to an MCAS Diagnosis

Q: Talk about the diagnosis process for your MCAS. How long did it take for you to get a clear idea of what was happening in your body?

Ashley: I was diagnosed in 2023, but I have been symptomatic pretty much my whole life. Doctors just didn’t know what it was. There is not a great deal of knowledge and education about MCAS.

When I was younger, I was constantly having hives and rashes. I would get chicken pox symptoms every single year. Doctors would say, ‘This is chicken pox, but it’s uncommon for you to continue to get it, because you’ve already had it.’ They would say, ‘There’s something wrong, but we don’t know what it is.’ I grew up with doctors telling me I’m unlucky, which is not a great thing to hear as a child.

When I was in the 8th grade, lymph nodes in my neck suddenly clumped together overnight, creating a mass that was the size of an egg. It was very painful. I had to have lymph node dissection surgery (also known as a lymphadenectomy). I now wonder if this was related to MCAS.

I was finally diagnosed with MCAS after I went off to college in California in 2023. I became very symptomatic all of a sudden in my freshman year. I think it was due to the big life change of moving out of state to college that triggered my symptoms. In addition to stomach aches and skin rashes, I was passing out from just feeling so bad. I stayed in bed the second semester of my freshman year. And that was hard.

Then when I had the diagnosis, it was, ‘Okay, now I have to find doctors who specialize in MCAS.’ And there’s not that many of them. Thankfully, I was close to Los Angeles, so there were lots of resources for me. But figuring out how to manage my own health was really difficult.

Talking About MCAS With People Who May Not Understand

Q: How did you explain your condition with your roommates and friends at school?

Ashley: My friends all saw me before I got sick, and they saw me when I was sick, and then they saw me after. They were my roommates all four years of college, which is very special. They were great. I didn’t have to explain anything to them, because they saw me through being sick and getting diagnosed. They walked through that process right along with me.

But I have friends from home that saw me after my freshman year, and it was this drastic difference, and they were like, “Whoa, what happened?” Talking about it was difficult at first. It was hard to explain how I went from a joyful, energetic college student to feeling exhausted and needing to rest 24/7.

As my symptoms became more managed, I was able to talk about it more. I realized how much people did not know about MCAS and the other conditions I have. Talking about it and educating people helped me learn more about my disease and myself. I decided to become an advocate.

Gaining Confidence Through Advocacy

Q: How has being an advocate brought you greater confidence?

Ashley: Talking about my illness and sharing what I experienced just made me feel more confident in myself. I know that I’m not only helping myself, but I’m also helping a community of people who often feel voiceless.

I think that’s really empowering in itself. I’m able to share things that people usually don’t understand. They can go about their life with the bits of knowledge that I’ve shared with them and then share that knowledge with other people. It’s a chain reaction of people starting to understand these very niche diseases that you’re experiencing.

And it makes you just feel like you are part of something bigger and you feel more included in society in general.

Finding the Right Treatments

Q: How are you handling treatment?

Ashley: I’m on two biologics. One is Xolair® (omalizumab) for my chronic urticaria. It’s also sometimes prescribed off-label for mast cell disease. And then I also take Humira® (adalimumab) for a chronic inflammatory skin disease I have called hidradenitis suppurativa.

Both biologics are injections. So obviously I am not scared of needles, thank goodness. I think I would really struggle if I was afraid of needles. Both have been very helpful. They helped control my skin rashes and chronic hives. I was able to go outside more, enjoy nature, and reintroduce activities that previously caused my symptoms.

The other treatment I started is subcutaneous immunoglobulin therapy (SCIg). This is a biweekly infusion that is done at home with four needles in the abdomen. The infusion delivers antibodies derived from donated plasma into your body. It’s helping reduce my infections and symptoms. In terms of side effects, I do get headaches about 6 days after the infusion, but they don’t last long. The headaches are part of the immune response from the therapy.

A lot of people have difficulty getting SCIg therapy covered by insurance. Thankfully, I was able to get it covered after I had a severe case of Respiratory Syncytial Virus (RSV), but I had to fight two years for it.  The therapy has been game-changing for me. I’ve noticed a tremendous difference. My body feels more at a calm state.

What Treatment Has Made Possible

Q: What else has treatment made possible in your life?

Ashley: Working full-time. When I was first diagnosed, I truly could never have pictured myself working full-time. In the setting that I’m working in, which is camp director, I’m with 40 kids every day, and I love them, but they’re constantly screaming, and you can get so overwhelmed. But that’s also the beauty of camp! We’re playing games and running around all day. I did not think that was possible, for sure.

I’m also able to go out of the country on trips. That’s a big one. Before my MCAS flared up, we planned a European trip with my entire family. Then I got sick and we were wondering, ‘How am I going to go on this trip?’ But we had prepaid for everything, so we went on it anyway.

Europe was so beautiful, but I was in a wheelchair the entire time due to my joint pain. I learned that Europe is not very wheelchair-accessible. It was hard to navigate. After that trip, I thought, ‘I never want to leave the country ever again.’

Last summer, I was feeling better and we went on a family trip to Ireland. I was not in a wheelchair this time, I was able to walk. I even did a small hike, and that was so awesome. I was like, ‘Okay, I can do this.’ I realized with proper management and support, I can travel, which is something I have always really enjoyed doing.

Travel became possible because of all the medications and treatments I’m on. So I feel I’ve come a long way.

Planning Around Chronic Illness

Q: How do you handle day-to-day life with a chronic illness?

Ashley: I’m a very organized person, and I’ve never really been super spontaneous. With these conditions, there is usually no spontaneity. I’ve accepted that, because to do the things that I love, the fun activities and trips, I have to plan. It’s constant planning.

I have to figure out how I can get myself to feeling my best before doing that fun activity. Then I have to figure out how to take care of myself afterwards.

My family and friends know how much planning is involved, too. There’s no, ‘Hey, do you want to go out tonight?’ It’s more like, ‘Hey, do you want to go out in four nights?’ I need a four-day warning!

Finding Resilience

Q: How do you think living with these conditions has shaped who you are?

Ashley: I’ve definitely become more resilient, for sure. I’m more passionate about helping people in similar situations – and being an advocate for a more accessible healthcare system.

I was able to go to Allergy & Asthma Day Capitol Hill last May, and that was just a dream come true. Three years ago, with my health condition at the time, I would have never imagined I could do that – and I had such a great time.

It’s changed me. I want to make sure that people who may not feel comfortable speaking up about their illnesses or advocating for themselves feel heard. I want to be a voice of hope for them. When I was sick, having people in my corner was what helped me get through it.

I also think I’ve become more grateful. I’m always trying to live in the moment, because you never know what tomorrow could bring.

A New Perspective on Healthcare

Q: How has living with a chronic illness shaped how you think about healthcare?

Ashley: For one thing, I have realized how difficult insurance is to work with. Now that I’m over 18, I’m in charge of my own healthcare. Insurance can be so difficult. It’s frustrating you have to prove yourself over and over again to insurance companies when you need medications to live with these conditions daily. That really opened my eyes.

There are a lot of great doctors who care a lot, but there are some doctors who are not as educated in this field of MCAS. Some will even doubt your symptoms. That is a very frustrating thing to combat because you’re already insecure and vulnerable, and then someone asks, ‘But do you really feel that way?’

Something I’m passionate about is making the healthcare system and insurance more accessible. People are making insurance coverage decisions who are not really in the healthcare field. They’re making decisions from a money perspective. And they don’t see the life on the other side. They see what’s on paper, but they don’t see you, and that can be difficult.

Sharing Advice on Living with MCAS

Q: What advice do you have for other young people living with MCAS?

Ashley: Don’t be afraid to ask for help. I’ve always been very independent, but I’ve learned it’s okay to have accommodations. I think doing whatever helps you and your symptoms is what matters, and not what other people think about that. You can’t let other people’s judgments and opinions get the best of you.

I think it’s important to find a support system to help you get through everything, no matter what. Real friends will love all of you, and I think that’s important to know.

Also, I think it’s important not to compare yourself to others. Comparison is the thief of joy. At first after my diagnosis, I compared myself a lot to able-bodied people. That was really hard. I thought, ‘I’m 21 years old and I can’t go out every night. I’m not living my college years to the fullest.’

It took me some time to realize, ‘I am actually living my life to the fullest.’ It just looks different.