Kansas City, Kan- The discussion centers on three siblings, Angela, Bella, and Anthony, who have myoclonus dystonia (MD), a rare neurological disorder causing involuntary muscle contractions. Angela and Bella received deep brain stimulation (DBS) surgery, significantly improving their quality of life. Anthony, who still suffers from severe anxiety, has not yet undergone the surgery due to insurance and social challenges. Dr. Jennifer Chang and Dr. Andrea Lee explain the DBS procedure, which involves implanting electrodes in the brain to control tremors. The siblings share their experiences, highlighting the emotional and physical challenges of living with MD and the hope for better treatment options.
Angela Diaz, dystonia patient
- Angela recounts the early years of the siblings' diagnosis, starting with Anthony's Tourette's Syndrome diagnosis and Angela's difficulty eating with a spoon.
- She highlights the unique bond between siblings, especially when they share a rare condition like MD.
Dr. Jennifer Cheng, Functional Neurosurgeon, The University of Kansas Health System
- Dr Cheng explains the surgical procedure for implanting the DBS device and the placement of electrodes in the brain.
- She discusses the evolution of DBS and its use in treating various movement disorders, including Parkinson's disease and essential tremor.
Dr. Andrea Lee, Neurologist, The University of Kansas Health System
- Dr Lee explains the criteria for determining whether a patient is a good candidate for DBS and the importance of exhausting other treatment options first.
- Dr Lee explains the genetic mutation in the SGCE gene that causes myoclonus dystonia and its impact on brain function.
Wednesday September 17th is Open Mics with Dr. Kumer:
A treatment for cancer now has applications for patients with sickle cell disease. Scientists genetically modify the patient’s own blood cells—transforming them into healthy ones—and then infuse them back into the body.
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