Patient’s perspective: interview with a patient with hereditary ataxia
My name is Aniek Vollenbroek and I'm 28 years old. I live with my parents and two sisters near Enschede, and at the time of writing my boyfriend and I are working on our new house. My hobbies are framerunnen, to go out for dinner and reading. I also like to do different activities, such as sailing and going to the beach. I was diagnosed with cerebellar ataxia when I was 16, with a MRI scan. After DNA research I was diagnosed with SCAR8 (autosomal recessive spinocerebellar ataxia-8), caused by a mutation in the SYNE1 gene. For me, this neurodegenerative disorder is mostly present in my legs and torso, and I've difficulties with my balance, coordination and gait. I get therapy to keep my condition stable, exercise therapies and occupational therapy helps me a lot. When I'm tired, I do a powernap or watch Netflix.
Biography
My name is Aniek Vollenbroek, I'm 28 years old and I live in Hengelo, near Enschede. After secondary school, I studied BioMedical Laboratory (BML) research at Saxion University of Applied Sciences. Thereafter I studied the master Health Sciences at the University of Twente. Then, I've worked for three years at NX Filtration in Enschede. At the moment I'm looking for a new job that will fit with me and my challenges. For several years I do volunteer work for the ADCA/Ataxie vereniging Nederland, where I for example organize and write.
