Does anyone have experience of Neurofibromatosis (NF1)?

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EllieP
EllieP Online Community Member Posts: 3 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
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
    Tori_Scope Scope Posts: 12,468 Championing
    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
    strawberrysherbet11 Online Community Member Posts: 38 Connected
    @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
    ellieflower3 Online Community Member Posts: 184 Contributor
    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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