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Does anyone have experience of Neurofibromatosis (NF1)?

EllieP

Hello, I'm pleased to join this forum. I have siblings on Special Guardianship who both have disabilities as a result of a genetic condition Neurofibromatosis (NF1). The lad has ASD and Learning Disability and the lass has ADHD (medicated 3 times daily) and does not sleep well. I'd like to know if there's anyone in this forum with experience around NFI. Thanks in advance.

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Tori_Scope

Hi @EllieP

Apologies, I hadn't realised that you'd made a separate post about this. Thanks for sharing a bit more information about your siblings and the challenges they face.

strawberrysherbet11

@EllieP Hi, I know this post is a couple of months old now, but I have Neurofibromatosis Type One and got diagnosed quite early on in life (around age 4). I have quite a mild form of the condition but I'm here if you're still looking for someone with experience of it

ellieflower3

EllieP said:

Hello, I'm pleased to join this forum. I have siblings on Special Guardianship who both have disabilities as a result of a genetic condition Neurofibromatosis (NF1). The lad has ASD and Learning Disability and the lass has ADHD (medicated 3 times daily) and does not sleep well. I'd like to know if there's anyone in this forum with experience around NFI. Thanks in advance.

I do. I have a mild form. here for you

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