Hi, I’m Karissa — and I never thought I’d be here.
I used to work as a product manager in tech. I was independent, passionate, and always moving toward the next goal. But in early 2023, my health suddenly collapsed — and my life with it. What I thought was just “being tired” turned into something much more serious. After months of terrifying symptoms, I was finally diagnosed with a combination of complex, rare neurological conditions: Spontaneous Intracranial Hypotension (a cerebrospinal fluid leak), Postural Orthostatic Tachycardia Syndrome (POTS), Idiopathic Intracranial Hypertension (IIH), and more.
These aren’t just difficult conditions. They’re often misunderstood, misdiagnosed, and dismissed — especially by traditional healthcare systems. The result? I spend 20–24 hours a day lying flat, because being upright causes intense spinal and head pain, dizziness, cognitive dysfunction, and sometimes full-body weakness. I’ve fallen multiple times. I’ve experienced vision changes, trouble speaking, and facial paralysis. And yet, I’ve repeatedly been told by doctors that it’s “probably anxiety” or that “nothing’s showing up on the tests.”
It took over a year and thousands of dollars to finally get the right scans that confirmed my brain was sagging — proof of a persistent CSF leak. And even then, the path forward hasn’t been simple.
Why I’m Fundraising
Insurance has failed me. Most of the specialists I need — the ones who understand how to treat complex neurological conditions — are out-of-network or don’t accept insurance at all. The testing required to locate my spinal leak is expensive and often not covered. I’ve had to pay for my own medical records, out-of-state travel, second opinions, and holistic treatments that are keeping me stable while I wait for more definitive care.
I’ve already spent everything I had, and my parents have stepped in to help. But the costs keep coming. There are more advanced diagnostics I need, and additional treatments — from blood patches to guided imaging to therapies to help regulate my nervous system. There is no single cure, but there are next steps that could give me back quality of life.
This fundraiser will help cover:
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Out-of-pocket medical testing (MRIs, CT myelograms, bloodwork)
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Specialist consultations not covered by insurance
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Travel and lodging for out-of-state care
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Holistic treatments supporting pain relief and nervous system repair
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Mobility aids and home care essentials
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Legal and administrative costs related to disability appeals
Every donation, no matter the size, directly supports my ability to keep pursuing answers — not just for myself, but for the thousands of others living in this medical gray area with no clear roadmap.
Why This Matters
Spinal CSF leaks are treatable. So is POTS. But most patients go years without answers — and some never get them. Many people with these conditions end up bedbound, dismissed, or cycling through ERs without real help. I’ve met dozens of them online. I’ve become one of them.
That’s why I started sharing my story as Chronically Karissa — to raise awareness, advocate for research, and help others feel less alone. Even from bed, I’ve been building a community and trying to test solutions I can share. I’ve become a kind of “patient zero” — experimenting with everything from clean nutrition and peptide therapies to plant medicine and low-stimulation healing rituals.
This isn’t just about getting well. It’s about building something that could help change the system.
What You’re Supporting
You’re not just funding one person’s care. You’re helping me stay alive long enough to finish building the thing I came here to build: a wellness roadmap for complex chronic illness. You’re helping me research, document, and share what works. You’re helping me create a space for people with rare neurological conditions to feel seen, supported, and empowered.
Your support helps me keep showing up — as a voice for patients the system has left behind.
If you’ve ever felt dismissed by a doctor, if you know what it’s like to be too sick to advocate for yourself, or if you believe we deserve better options — please consider donating or sharing this campaign.
Thank You
It’s not easy to ask for help, but I’ve learned that healing takes a village. I’m deeply grateful for every person who reads this, who donates, who shares my story, or who simply holds space for people like me. Your support means I don’t have to fight alone.
— Karissa
Chronically Karissa