Living with Familial Hemiplegic Migraine with Paralysis: The Patient's Experience with Kirsten Blanco

  • Familial hemiplegic migraine (FHM) is a rare, poorly understood form of migraine with aura that can often mimic stroke, epilepsy, and other neurological conditions. In addition to the migraine head pain, other severe symptoms can include hemiplegia (unilateral motor weakness), impaired consciousness, and ataxia, which can be frightening for both the individuals suffering from and witnessing the episodes. This talk will not only provide background and discuss what is currently understood regarding the genetics and pathophysiology of FHM, but also describe the physical and personal challenges of living with such a condition and how proper treatment and lifestyle changes can make a difference in overcoming obstacles and living a healthier life. 

   

Kirsten Blanco has lived with hemiplegic migraine since adolescence, a rare form of migraine with aura that can present with debilitating neurological symptoms such as sensory, motor, and cognitive disturbances. Despite numerous obstacles and setbacks and the challenge of diagnosis, treatment, and management, she was fascinated by the puzzle of the human brain and received her Bachelor’s in Neuroscience from the University of California, Los Angeles with the intent to become a physician. As a patient within the rare disease community, she has been exposed to nearly every aspect of medicine, from the lengthy diagnostic journey to the importance of compassion in patient-physician interactions. She is currently a Clinical Research Assistant at Ambry Genetics working primarily in neurological and neurodevelopmental disorders, which has encouraged her interest in pediatrics and medical genetics so she can eventually provide care and be an advocate for children and adolescents struggling with rare conditions. 

   

Ms. Powis completed her Bachelor of Science degrees in Molecular and Cellular Biology and Psychology at the University of Arizona. During that time, she worked in cancer research at the University of Arizona Cancer Center with laboratory projects specializing in cancer genetics. Prior to graduate school, Ms. Powis worked as substance abuse counselor. In 2003, she obtained her master's degree in Genetic Counseling from Northwestern University. Upon graduation, Ms. Powis worked in prenatal and infertility genetic counseling and as a laboratory genetic coordinator at Genzyme Genetics. Prior to joining Ambry, she worked 7 years at the University of Arizona, in pediatric, neuromuscular, metabolic, cancer, adult genetic counseling and various research projects. Ms. Powis joined the clinical reporting team in 2013 and due to her involvement in numerous research projects, transition to the research team in 2015. She oversees clinical genomics and neurology research, initiating and conducting collaborations in novel genetic etiologies, characterized genes and other specialties.

  • Mon, May 14, 2018
  • 12:00pm PDT
  • Duration: 1 hour
  • C.E.U. 1 unit
  • P.A.C.E. 1 unit

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