Misplaced Neurons – Video series

Misplaced Neurons is a conversation series about life with Periventricular Nodular Heterotopia (PVNH or PNH), Grey Matter Heterotopia (GMH), Subcortical Band Heterotopia (SBH), and everything in between.

The first episode marks the beginning of the 9th edition of #MarchOnPVNH, an annual month of awareness event launched in 2014 for PVNH, GMH and SBH worldwide.

In episode 1, host Yolaine Dupont, founder of PVNH Support & Awareness and mother to Ella who passed away from X-Linked PVNH caused by a Filamin A (FLNA) deficiency as a baby and whom is affected herself, talks with Christina Frazier, an occupational therapist who was diagnosed with PVNH as an adult, as well as with Jennifer Sheffield-Herrington, school counsellor and mom to Parson who was diagnosed with X-Linked PVNH as a baby, and Jane Hartley-Jacques, a biomedical scientist who despite having symptoms all her life of X-Linked PVNH was diagnosed much later in life. Jane also has an affected adult daughter. Epilepsy in the most common symptom.

Music: Both of Us by Madiran (Pixabay)