Mackenzie’s Story
Mackenzie is a 15 year old PANS survivor who has battled the disorder for the past six years. Due to her positive experience with a neurologist, she wants to become one and help others with PANS/PANDAS! Mackenzie also shares valuable insights about PANS/PANDAS on her Instagram and TikTok. You can find her at @neuro.nibbles.forpans! Mackenzie is now fully off medication because of her dedication to her healing journey. Trust the process, and you can end up in remission just like Mackenzie! Read her interview here:
Q: What is the most valuable advice you can offer to others who are in the thick of their PANDAS/PANS symptoms?
A: Your support system is the best. They know how to help you feel better and it can always get better. Flare ups are a short period of time and at least for me puberty helped me overcome a ton of my symptoms.
Q: What is your dream job and vision for your future?
A: My dream job is to be a neurologist because after my pediatrician telling me I belonged in a psychiatric hospital and other doctors not knowing what to diagnose me with, I finally found a neurologist that knew what was going on with me. That has inspired me to want to be able to diagnose kids who were just like me, as a neurologist, in my future. I want to be able to make the kids I diagnose feel understood because at one point I was just like them. The neurologist I saw made me feel comfortable and I want to be able to show kids that you can be okay after going through hard conditions such as PANS.
Q:How do you explain PANDAS/PANS to others who may not be familiar with the condition?
A: I tell them to check out my advocacy pages, neuro.nibbles.forpans on TikTok and Instagram which has explanations of what PANS/PANDAS is as well as the follow they normally give helps bring awareness to others.
Q: What do you wish people understood about living with PANDAS/PANS that they might not see from the outside?
A: That it is a constant battle in your mind. My head was always hurting from the pain of intrusive thoughts constantly, the way I had to go about my day going backwards to touch something a certain number of times or turn it a certain way, the way it seems like you are struggling from the outside is just the tip of the iceberg.
Q: What do you want other kids or teens experiencing PANDAS/PANS to know about their journey?
A: That you can end up okay. Yes, sometimes symptoms still come and go, but I am 100 times better than I was, being now 6 years in the future, and I’m fully off medication and have been.
Additional comments:
One of my favorite foods was always yogurt. Frozen yogurt, yogurt cups with m and ms, everything you can think of. I remember I was sitting in my school classroom about to leave for gym and I had just finished my strawberry yogurt, it was delicious. The teachers phone rings and it’s my mom. “Tell Mackenzie she can’t eat the yogurt we packed her for lunch, we will explain when she’s home.” I didn’t think much of it. Now I haven’t had yogurt in 5 years. It’s much more then just symptoms, but being cautious of the live cultures for flare ups is every worse. I’m gluten free for the most part now, I’m slowly starting to reintroduce it into my diet and all I want is a yogurt. That feeling of childhood and that remembrance of comfort I felt when I would get frozen yogurt after every special occasion and with my dad on daddy daughter dates.
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