Forum


donatenew

Welcome, Guest
Username: Password: Remember me

TOPIC: daughther with dopa responsive dystonia

daughther with dopa responsive dystonia 2 years 1 week ago #3759

Hello,
This is my first time posting anything on this forum. I'm in need of some advice/ support from anyone who's child also has dopa-responsive dystonia. My 4 year old daugther called Gracie has just been diagnosed with this at addenbrookes. This genetic condition is so rare that they have never seen any cases of this. I was just wondering whether there were any other families out there or people who are living with this rare genetic disorder?
Thanks for listening
Vicky xx
Last Edit: 2 years 1 week ago by Vickyanne42.
The administrator has disabled public write access.

daughther with dopa responsive dystonia 2 years 5 days ago #3765

  • Janet.Scott
  • Janet.Scott's Avatar
  • OFFLINE
  • Moderator
  • Posts: 13
  • Thank you received: 4
  • Karma: 0
Hi Vicky
we have a helpline if you want to talk to someone about your daughter: 020 7793 3650 10am to 4pm weekdays.

best wishes
Janet
The administrator has disabled public write access.

daughther with dopa responsive dystonia 2 years 4 days ago #3769

Hi Janet, thanks for the reply. I have been trying to ring the helpline however it rings and goes to the answerphone, I have left my name and number if someone can get back to me
The administrator has disabled public write access.

daughther with dopa responsive dystonia 1 year 9 months ago #3818

  • weeble
  • weeble's Avatar
  • OFFLINE
  • Senior Boarder
  • Posts: 10
  • Karma: 0
Hi. I have DRD but it was diagnosed as an adult. There is a good support group on Facebook with mums on there with children with DRD. Just look up dopa responsive dystonia and it should come up. Take care x
The administrator has disabled public write access.
Time to create page: 0.107 seconds