Bullying in the Huntington's Disease Community

June 1, 2018

Awareness of the destructive consequences of bullying has hit an all time high in recent years with news stories of incessant bullying that has resulted in suicides, mental illness, miserable day to day lives and even school shootings. Those of us in the Huntington's Disease community are not immune to becoming targets of this behaviour. Some of this bullying is even perpetrated by those within the HD community itself.

 

 

In 2012, 9 year old Kathleen Edward died from complications of Juvenile Huntington's Disease surrounded by 30 of her family and friends.  Two years before her death she was the victim of what was termed as "ghoulish" bullying from an adult neighbour, reported Daily News. It came in the form of cyber bullying where doctored photos of her were posted online of the girl with her eyes closed and a skull and crossbones beneath her eyes.  A photo of her mother who had passed away the year before from Huntington's Disease was also posted showing her being cradled by the Grim Reaper. The emotional turmoil this would have caused must have been extraordinary.  Many people around the world rallied to the cause, bringing about awareness of the girl's plight and of the disease itself which led to the eventual ousting of the neighbour from the community.

 

Another case involves Lorraine Parkin, a mother of three, who suffers from Huntington's Disease. She alleges that her caregiver, whom she hired as a means to stay in her own home, bullied her so badly that she was forced to leave her home and take refuge in a long term care facility.  She charges that her 54 year old "experienced" caregiver dragged her around like a rag doll and even made her eat in a horizontal position putting her at great risk of choking. Her hair was left "chronically knotted". According to