Alyssa MacKenzie | MakeLemonadeWithLupus

Patient Leader

Alyssa graduated from BU with a degree in liberal arts but without a name to call the illness with which she grew. By the time she was officially diagnosed with SLE, she was already an unofficial advocate for “otherness.” It came naturally to Alyssa, whose sister has autism; she felt it her duty to educate her peers + normalize disability. She has + continues to write for various publications, particularly regarding her own experiences as a woman disabled by chronic illness. 8 Fast Facts: 1️⃣ my name is Alyssa; 2️⃣ I’m 31 years old; 3️⃣I live with my fiancé in the town in which we grew; 4️⃣I am the oldest of 5 medically complex kids; 5️⃣ I live with SLE, what feels like every form of arthritis, dysautonomia, mast cell activation syndrome, a mitochondrial disease that has me eating a veggie-heavy diet + unable to take a lot of meds, plus a bunch of other diagnoses; 6️⃣I have a very specific outlook on how to feel when chronically ill, which is that you should be allowed to feel whatever you feel + you should be allowed to verbalize that along with your lived experience (as long as it doesn’t harm anyone); 7️⃣my quest for awareness + advocacy is as comprehensive as possible + I am always looking to learn more. It's my belief that not one of our bodies is going to feel as good as it can until every body is taken care of as best as we can. In addition to the latest research + findings, expect my activism to stretch across + include every human/social experience/issue that intersects with chronic illness + disability (which is all of them, since no body is “safe” from disability + chronic illness). Not a single person is truly safe in medical spaces + greater society until all of us have equitable medical access + care. The advancement of medicine + medical technology for which we are all so hopeful is without question limited by our ability (or, more realistically, inability) to be fully, exhaustively inclusive; 8️⃣Everything I am I owe to my mama.

Location

New Canaan, CT

Nominations

Best Kept Secret

Alyssa is worth nominating solely based on the positivity she shows through her adversity. While battling through a chronic illness she shares information, resources, and translucently sheds light on her struggles while still imparting wisdom. She is both a resource and an honest window into chronic illness. Her voice is both poetic & informative.  — Ashley

Alyssa MacKenzie | MakeLemonadeWithLupus

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