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Jennie Ann

@justjourneywithjen

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Living proof that missed diagnoses leave scars. Battling chronic and rare, daily.
#vhlwarrior #ChronicHell #VHL #RareButReal #HS
@jennie_grl

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Living with VHL might seem like a smooth journey from the outside — but for me, it’s anything but. The treatments, the surveillance, the pain, the waiting. It’s relentless. It’s overwhelming. It’s filled with uncertainty that never lets up. And I navigate most of it quietly.

I get at least 6 MRIs a year — more than most people will have in a lifetime. On top of that, there are CT scans, ultrasounds, and constant bloodwork. I travel yearly from Hawai‘i to the NIH in Maryland and MD Anderson in Texas for care. Managing my health is a full-time job — one that never gets a day off.

So here’s a reminder: just because someone seems to be doing well doesn’t mean they are. We might look fine, but we’re not always okay. It’s easy to forget that the people you see as “handling it all” still need grace. We’re not superheroes — we’re humans, doing the best we can.

#VHL #VHLWarrior #VonHippelLindau #VHLAwareness #VHLAlliance #RareDisease #RareDiseaseAwareness #ChronicIllness #InvisibleIllness #YouAreNotAlone #HealthJourney #ChronicLife #ThisIsWhatChronicIllnessLooksLike #BehindTheSmile #StrengthInVulnerability by @justjourneywithjen

For years, I fought my own body while being told there was nothing wrong. Enduring endless tests, only to be told it’s all in my head. I knew something was wrong but I was ignored by the very people meant to help.

A broken system that doesn’t care enough to listen or act.

I didn’t just face physical pain—I faced being dismissed, over and over again. I demanded answers, pushed for testing, but for too long, I got nothing.

The truth? A crucial diagnosis was missed and I paid the price for their lack of do-no-harm.

********************************************** Early detection, genetic testing, and trusting our instincts can change everything.
This fight isn’t over. And I’m still in it.**
#FightingBack #PatientAdvocacy #StillInTheFight #RareDiseaseAwareness #VHL
#VHLWarrior
#VHLAwareness
#VonHippelLindau
#RareButReal
#MedicalGaslighting #ChronicIllness by @justjourneywithjen

Medical gaslighting almost cost me everything.

Imagine being told for years that nothing is wrong — while your body is screaming for help. Imagine doctors overlooking a CT scan from 2012 that clearly showed signs of a genetic condition — and doing nothing. Imagine trusting experts while your health silently deteriorates.

Despite symptoms, despite my instincts, despite the evidence. They failed me.

It wasn’t until much later that I learned the truth: a CT scan from 2012 already showed clear signs of my genetic disorder. No one told me. No one investigated further. No one ordered the genetic testing that could have changed everything.

This is not just bad luck. This is negligence. This is the system failing rare disease patients over and over again.

If they listened — if they looked closer — I would have been treated completely differently. So much unnecessary suffering could have been avoided.

If genetic testing had been done when it should have been, my treatment would have been different. My life could have been different.

The medical system needs to do better. Doctors need to do better. Patients deserve better.

This is my horror story — but it’s not just mine. It’s a reality too many of us live — it’s the story of so many people in the rare disease community.

Early diagnosis matters. Genetic testing matters. Listening to patients matters.

#MedicalNegligence #RareDiseaseWarrior #RareDisease#ChronicIllnessAwareness #MedicalGaslighting #DiagnosticDelay #DoBetter #RareButReal #GammaKnifeRadioSurgery #GammaKnifeRadiation #MedicalGaslighting #VHL
#VHLWarrior
#VHLAwareness
#VonHippelLindau by @justjourneywithjen

“There is no greater agony than bearing an untold story inside you.” — Maya Angelou

This is the start of something I’ve gone back and forth with for a while. I’m here to be honest—to create a place for parts of this experience that often go unseen.

I live with rare diseases, chronic conditions, and medical complexities most people have never heard of. They’ve shaped my life in ways I’m still unpacking—physically, emotionally, mentally, and everything in between.

I’ve triumphed through most of this journey quietly, in a body that doesn’t play by the rules. Where everything’s not fine, but I fake being well—and people believe me.

This is a space for untidy truths that don’t fit into neat conversations. By sharing what doesn’t quite fit elsewhere, maybe we can find pieces of ourselves in each other. Because sometimes, just knowing you’re not alone can change everything.

#VHL #vhlwarrior #vonhippellindau #vhlawareness #hemangioblastoma #BrainstemTumor #chronicdisease #lipodystrophy #SteroidOvarianCellTumor #ChronicConditions #HS #HidradenitisSuppurativa #PCOS #PolycysticOvarianSyndrome #LCV #LeukocytoclasticVasculitis #RareButReal #ChronicLife #MedicalMystery #StartOfSomething #SheDoesntKnowItYet #RareDisease by @justjourneywithjen