What if I could show you what’s inside of me, on the outside? I live with an ultra rare condition called Maffucci syndrome, which causes cartilage-based bone tumors to grow all over my body, often in unpredictable and painful ways. These growths don’t just change how I move or how I feel, they shape the literal structure of my skeleton. For most of my life, these tumors have been invisible to others, tucked beneath my skin, only seen on CT scans, MRIs, or X-rays. This wearable art piece is my wa

Imagine thinking your opinion matters more than my quality of life?... Couldn't be me 🤪 Video Description: Samantha is seen wearing an all-white ensemble consisting of a dress with dangling pearls, a bedazzled white headband, @betseyjohnson earrings (PR), red lipstick, and gold pointed flats with a pink AFO brace. She's putting on different types of pain patches while talking to the camera. The text overlay reads "pain patches don't ruin your outfit, bb icons 💫🤍✨" #ChronicPainAwareness #Disab

✨On Leap Day 2024, I casually had 75% of my scapula removed and my upper back muscles reconstructed. Why? Because a tumor had completely eaten away my shoulder blade. Like, the entire thing. Gone. The 25% that’s left? Still tumor.✨Doctors initially thought it was malignant because it was so aggressive: fast-growing, painful, and destroying bone. The scans looked terrifying. It behaved like cancer. I braced myself for the worst.But plot twist: it was a very active benign tumor (called an enchondr