From a pie-in-the face challenge to documentaries to a plan to light up Chicago in blue, Huntington’s disease activists rose to new creativity in 2014 in their quest to raise awareness.
One of the most ingenious initiatives, #BareYourTruth, materialized as a photograph of six naked women advocates from the Los Angeles area, their bodies partially shielded by placards with the letters C-U-R-E-H-D.
Tastefully sexy but haunting, #BareYourTruth captures an essential issue for the HD community: ill and at-risk individuals like me and our families have struggled to exit the terrible and lonely HD closet, tell the world of our plight, and focus society’s energies on improved care and the search for remedies for this untreatable neurological disorder.
The goal of #BareYourTruth is to “share the truth about HD,” explained DeAnna DeNaro, 49, a participant in the project. She lost her half-sister Denise DeNaro to HD on February 26.
“There isn’t anything fun about Huntington’s – it’s raw and it’s bare,” said Deanna in a phone interview on December 21. “When you’re naked, it’s a rawness, and you’re showing everything. If you can do that – to talk about something so raw and painful – ‘bare’ means you’re showing everything. We didn’t want to say ‘bare your soul.’ We wanted to do ‘bare your truth.’ Each one of has a truth about Huntington’s. When you talk about the truth, being naked is showing everything.”
Denise was 59 and had two children, now young adults. In 2001 DeAnna’s half-brother Donald DeNaro died at 52. He was believed to have HD. He had three children, today also young adults. DeAnna, Denise, and Donald shared the same father, but Denise and Donald had a different mother, who had HD. Of DeAnna’s five nieces and nephews, only one has tested for the disease. The result was negative. The other four remain untested and at risk.
Cross-country trips to offer care
For more than a decade, DeAnna traveled an average of five times per year from her home in Redondo Beach, CA, to Miami to help care for Denise. During that time, she has served on the board of the resurgent Los Angeles chapter of the Huntington’s Disease Society of America (HDSA), the last three years as president.
“I would go there a month at a time,” DeAnna said. “Each stage that she would enter into, we as a family had to collaborate to evaluate her care and what was the best for her, including her doctors and caregivers.”
As a result of her experience with HD, three years ago Deanna left her career as a manager in the construction business and opened a caregiving business. She will continue in that field when she moves next year to Germany, her husband’s homeland.
Source: At Risk for Huntington’s Disease