While there is no cure or treatment for KAND yet, we can manage certain symptoms related to the disease. As we work to discover cures, current available treatments are purely symptomatic. Work closely with your physician to understand available treatment options and manage the constellation of challenges that KAND causes.
Managing Symptoms
What doctors do we need to see?
- Spasticity: Consult a neurologist and physiatrist for management of spasticity.
- Movement Disorder and Muscle Tone: Physical and occupational therapies are critical, as well as orthopedic consultation.
- Epilepsy and Seizures: Ask your neurologist to order an EEG (a measurement of the brain’s electrical activity) to rule out epilepsy; preferably an overnight (24 hour) EEG to monitor brain activity during sleep.
- Eyesight and Vision: Consult a neuro-ophthalmologist, and if not possible, an ophthalmologist to closely monitor changes in vision and optic nerve atrophy.
- Developmental Delay and Cognition: Follow up with your neurologist and request a brain MRI to monitor and evaluate for cerebral atrophy. A neuropsychologist can help determine KANDs impact on development and cognitive impairments as well.
- Speech: Speech therapy and routine monitoring with your primary care physician or pediatrician can improve communication, including speech.
For KAND clinical care, please consult your physician regularly and direct them to our website for the most up-to-date research and potential treatment options. The team at Chung Lab has extensive research initiatives to inform the medical community. This research is supported by KIF1A.ORG and other resources.
What We Don’t Know
Until 2016, very little was known about KAND. It is important for caregivers and clinicians to look closely at every indication, to properly identify and diagnose this severe neurodegenerative disease. We are still learning about KAND and research is vital for us to discover treatment before time runs out. By supporting research initiatives together, we can stop the clock on KAND.
The constellation of symptoms, severity and progression of KAND occur at different rates and ages of every individual. Our forefront efforts to characterize KAND include the Natural History Study survey, KOALA assessments to create clinical endpoints, and the EEG study to determine electrical “fingerprints” of KAND in the brain. If you or a loved one has been diagnosed with KAND consult your physician immediately and reach out to our committed team of advocates.