Family raises awareness for 5-year-old son's ultra-rare chromosomal disorder
Family raises awareness for 5-year-old son's ultra-rare chromosomal …
3 weeks ago
wjbf.com
Having a child with a rare chromosomal abnormality means getting to explain it again and again. For Kenzie's 1st ED trip, my brain struggled with where to even start to get doc up to speed. And don't get me started on repeating myself on every MyChart form before every specialist, which really adds up when you have 10 specialists. How are we dealing, folks?#medical #medicallycomplex #NICU #PICU #health #healthcare #medmom #humor #momlife #Meme #memecut
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Having a child with a rare chromosomal abnormality means …
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humix.com
The biggest challenges reported by individuals affected by a rare chromosome or gene disorder was the impact and management of their symptoms and behaviours, and lack of understanding and judgement from others. Many respondents of our survey also reported explaining their condition and managing the uncertainty around it was difficult. For parents and carers of adults with rare chromosome and gene disorders, uncertainty and worry about the future was identified as one of the key challenges. In pa
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