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Callie’s story

After a normal pregnancy and delivery, our baby daughter Callie began experiencing seizures at just 6 weeks old. We were terrified and had no understanding… Continue reading Callie’s story

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Eye Believe in A Cure

I’ve been diagnosed with Uveal Melanoma. There is no treatment. 5 yr life expectancy. I’ve been trying to get care, from the only MD in… Continue reading Eye Believe in A Cure

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What is “normal” anyway?

I’m Kallie and I live with Neutropenia, alopecia, POTS, and deep infiltrating endometriosis 2. As a child and teen, I would get a simple paper… Continue reading What is “normal” anyway?

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Maya: A Journey of Determination and Hope

I’m Ioana from Romania, the mother of 7-year-old Maya and this is our story. At the age of 1, we noticed a small bump in… Continue reading Maya: A Journey of Determination and Hope

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När livet blir till en kamp med Trigeminusneuralgi självmordssjukan

Jag gick i 10 år innan jag fick min diagnos. Har opererats många gånger, både mikrovaskulärdekompression, ballongvidgning, fått över 100 nervblockader. Mitt kall är att… Continue reading När livet blir till en kamp med Trigeminusneuralgi självmordssjukan

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Emily’s Journey: Living with a Rare and Complex Disease

At 26 weeks pregnant in 2014, I was advised to consider termination. My baby had abnormal tumors everywhere, and doctors had never seen anything like… Continue reading Emily’s Journey: Living with a Rare and Complex Disease

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THE FOUR HORSEMEN

Some people collect coins or stamps. I do not collect anything as normal as those things. I collect rare or superrare medical conditions. Since 2018,… Continue reading THE FOUR HORSEMEN

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RHOBTB2: How it all started

When Malia was just a few months old, I noticed something wasn’t right. At 3–5 months, she struggled to sit up without falling, her body… Continue reading RHOBTB2: How it all started

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My Journery from Rare Patient to Medical Student

From the beginning, my journey was anything but typical. My parents pushed for answers. It wasn’t until I was two years old that I received… Continue reading My Journery from Rare Patient to Medical Student

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