What is Aicardi Goutieres Syndrome? Watch this quick 2 minute video to understand this #raredisease #leukodystrophy #aicardigoutieressyndrome #aicardigoutieres #rarediseaseawareness #disabilityawareness
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What is Aicardi Goutieres Syndrome? Watch this quick 2 minute video to understand this #raredisease #leukodystrophy #aicardigoutieressyndrome #aicardigoutieres #rarediseaseawareness #disabilityawareness
Mar 15, 2024
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#aicardigoutieressyndrome #leukodystrophyawarness sharing a little of our personal journey, this video helped me identify that my son was having problems leading a final diagnosis- thank you for making these videos @Beachgem10 @Beachgem10
1:12
#aicardigoutieressyndrome #leukodystrophyawarness sharing a little of our personal journey, this video helped me identify that my son was having problems leading a final diagnosis- thank you for making these videos @Beachgem10 @Beachgem10
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3 months after doing in depth genetic testing, Leo was diagnosed with Aicardi-Goutieres Syndrome, a rare genetic disorder that affects the brain, spinal cord and immune system. There are only 400 cases known in the world. Leo’s diagnosis affects almost every aspect of his daily life, including the way he moves, sees, eats, and communicates. With everything that Leo faces, he encourages us to look for the positive in each day and to enjoy the ride. Visit the link below to join us in shouting love
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🎙️💬 PART 2: En Gerard va ser diagnosticat amb la síndrome d’Aicardi-Goutières quan va complir els 2 anys. Els primers símptomes varen aparèixer als 7 mesos de vida. Es tracta d'una malaltia degenerativa, poc comuna, en què hi ha una inflamació en el cervell que provoca paràlisi, calcificacions cerebrals i retards en el desenvolupament, entre altres. 📲🎧 En el pròxim episodi et presentam l'associació ABAIMAR, l'entitat a la qual IB3 ha donat suport durant el mes de març amb la campanya #IB3don
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Clara foi diagnosticada com duas doenças raras, aicardi goutieres e paraparesia espastica genética. mas nada tira a felicidade e determinação que ela tem. Minha joia rara.
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