In this episode, we sit down with DBS patient Amybel Taylor as she shares her journey of being diagnosed with dystonia at a very young age. After years of living with the condition, Amybel, with the support of her parents, made the life-changing decision to undergo DBS surgery. Now in her early 30s, she has…
Exhibitions and Initiatives of the Children’s Joy Association Dedicated to Rare Disease Days
The Children’s Joy Association is committed to standing for patients with Dystonia and is a member of the National Alliance for Rare Diseases being a part of its Board. Some forms of neuromuscular Dystonia are considered rare diseases and the association plays an active role in supporting patients and raising awareness about these conditions. In…
Children, Dystonia and DBS Webinar
Monika began by welcoming us all to this webinar on Children. Dystonia and DBS organised by Dystonia Europe. She explained that we have 3 speakers, Sarah Perides Advanced Nurse Practitioner, Dr Margaret Kaminska both from the Evelina Children’s Hospital and Alfonso Fasana from the Toronto University Hospital. We had hoped to have a patient too…
