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Continue reading →: How to Explain Systemic Mastocytosis in One Minute | Life Beyond the FlareWhen you’re speaking on someone else’s behalf, your words become their safety net. Sometimes, the most critical setting for achieving clarity is a medical one, where fast and precise communication can significantly impact outcomes.
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Continue reading →: Book AnnouncementLife Beyond the Flare: One Diagnosis – A Thousand Ways to Fight By Rachell Largent-Phillips “I had hoped for a map. Instead, I got a blurred battlefield sketch with a few coordinates, a vague legend, and a warning: proceed cautiously.” Twenty-one years ago, I was a medical student chasing a…
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Continue reading →: 5 Game-Changing Healthcare Bills That Could Save Lives and Cut Costs$400 for a life-saving EpiPen. Insurers forcing patients to play trial-and-error with their health. Families drowning in medical debt because co-pay assistance doesn’t count toward deductibles. This isn’t just a broken system, it’s a dangerous one. But five bills in Congress aim to change that. The Safe Step Act, EPIPEN…
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Continue reading →: Mast Cells Unmasked: Their Role and Impact in Systemic MastocytosisMast cells may not be something you think about daily, but for those of us with Systemic Mastocytosis, understanding these cells and their role in the body is essential. Mast cells are a critical part of the immune system, especially in defending us against allergens, pathogens, and injuries. But when…
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Continue reading →: Fact Over Fiction MondayTrue or False? Systemic Mastocytosis is an extremely rare disorder, affecting roughly 1 in 10,000 people worldwide. Answer: True. With a prevalence of about 1 in 10,000 people, Systemic Mastocytosis (SM) is classified as a rare disease. But this rarity brings real challenges for those living with it:
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Continue reading →: Living with Linda: How Naming My Disease Helped Me Reclaim My LifeWhen I was diagnosed with Systemic Mastocytosis, it felt like my life had been redefined by an unwanted identity. In an attempt to regain control, my friends and I gave my illness a name: Linda. Naming it helped me see my disease as a separate presence, not as something that…
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Continue reading →: Living with Systemic Mastocytosis: My Journey, My MissionWelcome! I am Rachell Largent-Phillips, a patient advocate and influencer navigating life with Aggressive Systemic Mastocytosis (ASM), a rare disease that impacts the body’s mast cells. My journey began in 2004 with a single hive and has since evolved into a life defined by resilience and advocacy. Here, I share…
I’m Rachell
Welcome to Life Beyond the Flare, a space where rare disease meets real life.
I am a rare disease advocate, digital health communicator, and nonprofit leader living with Systemic Mastocytosis. This site is where I share my personal journey, practical insights, and honest reflections about navigating chronic illness with resilience, clarity, and purpose.
Whether you are a patient, a caregiver, a clinician, or someone who is just beginning to learn about mast cell disease, you are welcome here.
Together, we advocate for change, educate for understanding, and empower each other to live boldly.
Let’s create a future where being rare never means being overlooked.
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