Alexandria’s Story

Becoming Wonder Woman

Turning 26 was supposed to be a time for celebration. Who would have thought that a piece of cake I’ve had before would change my life in an instant? I was breaking out in hives. Within minutes, I started to feel tightness in my throat and my tongue swelling. I had never experienced an anaphylactic reaction before. I was scared and didn’t know what to do. My dad acted quickly and administered the EpiPen. Within a few minutes, I was able to breathe. I’ll be forever thankful for the Firemen who stood in my kitchen and argued with the Paramedics to take me to the hospital. I can still hear the Paramedics saying, “She’s fine, she doesn’t need to go.” The Firemen said, “She could have a rebound reaction, she needs to go.” I had no idea what a rebound reaction was. Well, I did an hour later. As I sat in the ER, another anaphylactic reaction started to happen. Little did I know that for the next 2 weeks, anaphylactic reactions would be part of my daily life. The doctors didn’t know what else to do for me and couldn’t figure out why this was happening. Finally, I was strong enough to come home with a medicine regiment that would help me. Or so, I thought.

After that, I started to react to things I’ve never had an issue with. I had an anaphylactic reaction to the smell of fish. At the time, I didn’t know that it would continue like this over the next two years of my life. It was very unsettling when the head of the Allergy Department at your hospital tells you “Your case is too complicated.” The “anaphylaxis specialist” began telling me that it was anxiety related and I had PTSD. After another couple of weeks in the hospital from anaphylaxis, I decided it was time to find another doctor. You cannot create a swollen tongue and ridges on its side.

My endocrinologist wanted me to be seen by MAYO in Boston, but the waiting list was over a year long. My endocrinologist ended up ordering the same tests. Within two weeks, we had more answers. He said to me, “Alex, something’s going on, you need to go back to the hematologist.” I made an appointment to see my hematologist at Sloan Kettering. He looked at my results from the recent tests and he said “You have Mast Cell Activation Syndrome.” I said, “What is that and what do we do now?.”  After hearing this diagnosis, I had no clue what I was in for, but I was so determined to get rid of this and move on with my life. I had no idea at the time that it would become the rest of my life. I remember walking into the specialist’s office and thinking, I’m finally going to beat this thing. He explained to me about MCAS, how rare it is and how it was something I’d have forever. I remember thinking, I’m only 27, this can’t be. He changed my medicine and told me “Try this for 3 months and we will see how it goes.” I thought I would beat the odds- but I was very wrong.

A month later, I was thrown into the worst reaction of my life. I ended up being in the hospital for 59 days. The repeat anaphylaxis was so severe that I was in ICU for about a month on a continuous EPI drip while I was receiving other medicines including EPI in my leg whenever I had a reaction. To say this was a traumatic experience is an understatement. There were days that I didn’t think I was going to live. The symptoms during the reactions were getting worse between throwing up, no appetite, not being able to see, etc. I knew more than some of the doctors as some had never even heard of MCAS. This was very difficult as a patient. I had my moments and breakdowns of crying, but it only made me stronger in the end. No matter what happened to me, I continued to push through. Whether it was taking deep breaths to help control my breathing, sitting with wet towels and ice poured on me to help soothe my skin, or constant injections of medicines, I did what I had to, to stay alive. This is how I earned the name “WONDER WOMAN.” In some respects, I did beat it. I am still breathing and moving on with my life.

I am living proof that you can find strength in yourself if you just believe. Here I am, 30 years old living with MCAS and now Lupus but I am still fighting. Life does go on. I found the love of my life and married my husband this past April. MCAS does not have to take over your life. Yes, I have adjusted my life but there’s nothing more important than your health. Becoming “Wonder Woman” has taught me a lot about life. Be thankful for what you have and always smile. Autoimmune diseases are invisible to the naked eye. Let’s face it, it’s exhausting. But there is a light at the end of the tunnel, you must find it. I wish when I was going through all of this, I knew someone who had MCAS that could walk me through this. No one really understands what it’s like unless they experience it themselves. It was very scary not being able to breathe. Do I worry about it happening again? Of course, I do but I don’t let it run my life. I still do things I want to do within my own limitations. I am a SURVIVOR, and I will continue to fight this disease. To all the MCAS patients out there like me, KEEPING FIGHTING and keep your chin up. I BELIEVE one day there will be a cure for us. I am GRATEFUL to live another day to tell my story.

Skip to content