My Maffucci Syndrome is super rare - doctors didn't catch it until I was 21 😳 #fbreels #borndifferent #maffuccisyndrome #bonedisease #basketball | Born Different
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My Maffucci Syndrome is super rare - doctors didn't catch it until I wa…
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A lil Maffucci Syndrome update 🙃 Per usual, I gaslit myself into thinking my shoulder pain couldn’t possibly be “that bad” — meanwhile, I can’t even feed myself with that arm, cut my food, shower, propel my old manual wheelchair, etc. due to the excruciating pain. 🤦🏻‍♀️ My orthopedic oncologist called me with my scapula MRI results yesterday. My bone tümör grew, I developed tendonitis and bursitis (shoulder injuries from being a wheelchair user), and I also grew a vein tümör in my shoulder ar
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A lil Maffucci Syndrome update 🙃 Per usual, I gaslit myself into thinking …
9.2K viewsDec 3, 2023
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Ehlers-Danlos Syndrome tingz ✨ @ehlers.danlos Video Description: a variety of clips of Samantha, a Latina with a black pixie haircut, who has an ultra rare phenotype of Ehlers-Danlos Syndrome with Maffucci Syndrome. The text overlay reads "when you have a connective tissue disorder, so this actually happens to you on the daily" #EhlersDanlosSyndrome #ConnectiveTissueDisorder #DisabilityHumor #ChronicIllnessHumor #Hypermobility #EhlersDanlosAwareness | A Disabled Icon
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Ehlers-Danlos Syndrome tingz ✨ @ehlers.danlos Video Description…
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Mnemonic - Maffucci Syndrome vs Ollier Disease | NEET PG & INI-CET Ortho Rapid Revision
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Mnemonic - Maffucci Syndrome vs Ollier Disease | NEET PG & INI-CE…
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Mnemonic - Maffucci Syndrome vs Ollier Disease Mnemonic | NEET PG & INI-CET Rapid Ortho Revision
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Samantha Jade Durán on Instagram: "This is what monitoring widespread tumors looks like. Strapped down. Head to toe. Whole body MRI with a Brain MRI right after. Multiple times a year. For the rest of my life. This isn’t the “✨preventative wellness scan✨” some companies advertise for funsies. I have Maffucci syndrome, which is an ultra rare genetic condition that puts me at extremely high risk for developing all types of cancer. These scans monitor my tumors for any growth or malignant transfor
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Samantha Jade Durán on Instagram: "This is what monitoring widespre…
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Samantha Jade Durán on Instagram: "I can’t believe I’m even typing this 😭 For the first time in my life, my doctors told me there might finally be a treatment for my ultra-rare disease. I have something called Maffucci syndrome. It causes bone and vascular tumors to grow all over my body, and it puts me at high risk for developing all types of cancers. Until now, there’s never been a real treatment… only surgeries, severe pain, endless pathological fractures and other chronic injuries, and “wa
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Samantha Jade Durán on Instagram: "I can’t believe I’m even typing thi…
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