Hi, my name is Taliaferro! Our 3 year old daughter's been diagnosed with non-dystrophic myotonia

Taliaferro
Taliaferro Community member Posts: 1 Listener
edited April 2022 in Families and carers
Hello, I am here because our three year old daughter was recently diagnosed with non-dystrophic myotonia, a rare neuromuscular disorder which is often mild. She however has had a lot of painful muscle cramps and falls, and has trouble walking and with stairs. For the last year, cramps have kept her from sleeping through the night. We are yet to navigate support. I look forward to learning from this community!

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello and welcome @Taliaferro and thank you for joining the community today :)

    Thanks also for sharing a bit about yourself and your daughter, and I hope the community can help support you. You're more than welcome to browse the forum using our categories page, but I'd encourage you to visit our Children, Parents and Families category to chat with other who might be going through something similar.

    I'm not sure if you've been able to have a look a Scope's family support services at all? Navigate helps provide emotional support for parents, there's also Parents Connect. 

    Sleep Right may also be able to help if you are based in either London, Leeds, Northamptonshire or Peterborough.

    If we can help further please do say, but in the meantime I hope you enjoy having a look around :)

    Alex

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