The MRI scare and rapid trip to the US... #adrenoleukodystrophy #ald #rarediseases #mri
1:38
The MRI scare and rapid trip to the US... #adrenoleukodystrophy #ald #rarediseases #mri
1.1K views5 months ago
YouTubeChristie & Ken ALD - No Limits
Living with Adrenoleukodystrophy: Why I Chose Stem Cell Therapy #stemcell #shorts
1:00
Living with Adrenoleukodystrophy: Why I Chose Stem Cell Therapy #stemcell #shorts
897 viewsMay 10, 2025
YouTubeSwiss Medica Clinic
ADRENOLEUKODYSTROPHY का new trial #ald/AMN trial #GENETIC DISORDER #ALD का नया ट्रायल
0:28
ADRENOLEUKODYSTROPHY का new trial #ald/AMN trial #GENETIC DISORDER #ALD का नया ट्रायल
49 views3 months ago
YouTubeADRENOLEUKODYSTROPHY(ALD) FAMILIE…
Advice for newly diagnosed ALD AMN patients #adrenoleukodystrophy #ald #adrenomyleneuropathy
0:34
Advice for newly diagnosed ALD AMN patients #adrenoleukodystrophy #ald #adrenomyleneuropathy
465 views3 months ago
YouTubeChristie & Ken ALD - No Limits
Turning grief into action: founding Will to Cure ALD #adrenoleukodystrophy #ald #nolimits #rare
1:31
Turning grief into action: founding Will to Cure ALD #adrenoleukodystrophy #ald #nolimits #rare
266 views4 months ago
YouTubeChristie & Ken ALD - No Limits
How my son's diagnosis led to mine.. #adrenoleukodystrophy #ald
1:26
How my son's diagnosis led to mine.. #adrenoleukodystrophy #ald
1K views5 months ago
YouTubeChristie & Ken ALD - No Limits
The call that stopped the world... #ald #adrenoleukodystrophy #nolimits
1:39
The call that stopped the world... #ald #adrenoleukodystrophy #nolimits
1.2K views2 months ago
YouTubeChristie & Ken ALD - No Limits
1:41
Adrenoleukodystrophy में BMT कब कराए??#viral #bonemarrow #youtubeshorts #adrenoleukodystrophy
4 views2 months ago
YouTubeADRENOLEUKODYSTROPHY(ALD) FAMILIE…
1:33
What I'd do with one day without ALD #adrenoleukodystrophy #ald #nolimits #rarediseases
322 views4 months ago
YouTubeChristie & Ken ALD - No Limits
1:29
When doctors gave us two choices.. #adrenoleukodystrophy #ald #nolimits
77 views4 months ago
YouTubeChristie & Ken ALD - No Limits
1:13
If ALD vanished for a day...#adrenoleukodystrophy #ald
199 views5 months ago
YouTubeChristie & Ken ALD - No Limits
0:50
X-ALD का पता क्यों नहीं चलता है?#adrenoleukodystrophy #viral
25 views3 months ago
YouTubeADRENOLEUKODYSTROPHY(ALD) FAMILIE…
0:28
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
2.2M viewsFeb 25, 2025
TikTokclara_inge1
3:04
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
1.7M viewsJul 11, 2024
TikTokadaptivemama
0:44
Penyakit Adrenoleukodystrophy: Kisah Iman Ramadhani
2.2M viewsAug 25, 2023
TikTokimanramadhanii
2:40
Adrénoleucodystrophie : Dépistage précoce pour sauver des vies
24.5K views3 months ago
TikTokelaofficielle
0:15
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
110.7K viewsOct 5, 2022
TikTokneurologyminute
0:32
Tidak ada orang tua di dunia ini yang mau dititipkan Tuhan anak dengan kondisi spesial tapi jika memang ini jalan Tuhan aku percaya bahwa Tuhan akan mampukan kami orangtua EL untuk merawat EL sampai titik terakhir #ceritamamael #adrenoleukodystrophy #ALD #XALD #leukodystrophy #specialneeds #raredisease #sonshine #miracleshappen #indonesia #fyp
38.5K viewsFeb 27, 2025
TikTokclara_inge1
0:12
Panduan NGT dan Alat Feeding untuk Anak
27.8K viewsMar 29, 2025
TikTokclara_inge1
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
19.4K viewsMar 5, 2025
TikTokclara_inge1
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