Contact prime time Anytime!
prime time This is a space set aside specifically for those dealing with early-onset movement disorders and Generalized Dystonia.
Since receiving a firm diagnosis of early-onset primary torsion dystonia, I have sought out community connections and other information online. There are many wonderful bulletin boards and websites out there. So many great folks offer hope and encouragement, sharing their professsional and hard-gained knowledge on a daily basis. However, I was frustrated in my desire to find others whose experience mirrored the length and extent of my own.
My search revealed an opportunity to provide more information and support for children and teens dealing with the challenges of spasticity, speech disturbances, academic life, accessibility, questions on employment, medical care and more.
I am hoping that this site will be a helpful supplement to already well-established portals. I'm hoping it will be a place where young people, parents, teachers, caregivers and those with ptd can easily find each other. I hope this will be a great place to pick up new literature and other resources.
If you have any content or suggestions you'd like to add please do not hesitate to contact me. This site means nothing without community.
Take care and be well... Rebekah Willis aka Bekah, ca_bouge
Primary Torsion Dystonia, or Generalized Dystonia, is a neurological condition which causes spasm, involuntary movement and muscle contraction. PTD may or may not show symptoms in childhood and may often be connected to a mutation in the DYT1 gene.
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