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0:11
Adrenoleukodystrophy MRI Brain Case #shorts
270 views
4 months ago
YouTube
DEEP RADIOLOGY
0:11
🧠 Every Rare Disease Deserves Awareness. Every Family Deserves Hope.
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1 month ago
YouTube
Naturepath clinic
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International Adrenal Disease Awareness Day
5 months ago
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Living with Adrenoleukodystrophy: Why I Chose Stem Cell Therapy #stemcell #shorts
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May 10, 2025
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Swiss Medica Clinic
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How my son's diagnosis led to mine.. #adrenoleukodystrophy #ald
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9 months ago
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Christie & Ken ALD - No Limits
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Advice for newly diagnosed ALD AMN patients #adrenoleukodystrophy #ald #adrenomyleneuropathy
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8 months ago
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Christie & Ken ALD - No Limits
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If Your Child was Diagnosed with ADHD, Has ALD been properly Ruled Out?
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When a VUS was hidden how we confirmed Grandpa had adrenoleukodystrophy #adrenoleukodystrophy
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4 months ago
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X Out ALD Walk 💛❤️ #adrenoleukodystrophy #xoutald
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The Untold Story Behind Maxxine Dupri's Strength.
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Two Parents Were Told Their Son Would Die. So They Taught Themselves Science.
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ALD Gene Carriers: When a Child’s Diagnosis Reveals a Family Story #ALD #RareDisease
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Duniaku sedang tidak baik2 saja, begitu cepatnya kondisi EL drop dari yang tadinya luar biasa aktif menjadi drop dengan sangat cepat karena suatu penyakit yang bahkan tidak pernah kudengar sebelumnya pernah ada di dunia ini #sonshine #adrenoleukodystrophy #ALD #XALD #leukodystrophy #leukodystrophyawareness #raredisease #miracleshappen #fyp #indonesia
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Getting out of the house is a great option on days when my daughter is highly sensory seeking. Driving with the windows down, walking around, these can all help change up the day. #momtok #disability #disabled #disabilitytiktok #disabilityawareness #momsontiktok #specialneeds #parentsoftiktok #grwm #ditl #dayout #momofdisabledchildren #adrenoleukodystrophy #refsumdisease
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X-linked Adrenoleukodystrophy (ALD) is one of a group of genetic disorders called the leukodystrophies that cause damage to the myelin sheath, an insulating membrane that surrounds nerve cells in the brain. It leads to a long-term coma (vegetative state) about 2 years after nervous system symptoms develop. The child can live in this condition for as long as 10 years until death occurs. #genetics #neurologicaldisorder #brain #edu #edutokmotivation #edutok #neurology #disease
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Berguna banget untuk anak yang pakai selang NGT pake feeding buret dan tiang infus untuk gantungin buretnya, untuk tiang infusnya ada di keranjang kuning ya buat yg butuh #ceritamamael #adrenoleukodystrophy #raredisease #ALD #XALD #leukodystrophy #sonshine #fyp #indonesia
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It can be tough to have “traditional”family time as a family with a disabled child, but that just means we make it our own and figure out what works for us ! #familytime #movie #exhaustedmom #disabilityawareness #disability #specialneeds #adrenoleukodystrophy #familymovienight #parentingtips
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Jul 4, 2024
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0:21
Ganti selang NGT dulu, ga terasa sudah 1 bln EL pakai selang NGT, kadang sedih liatnya karna dulu EL suka bgt makan nasi dan selalu lahap kalo makan, but life must go on and i have to be strong for EL 💪 #ceritamamael #miraclebaby #adrenoleukodystrophy #ALD #XALD #leukodystrophy #raredisease #specialneeds #sonshine #indonesia #selangNGT #fyp
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Mar 5, 2025
TikTok
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