Highlights from the 2020 CHDI HD Therapeutics Conference are now here! This year’s Postcard covers HTT-lowering therapeutics, including an
HSC HD Profile: Kathryn Jordan
Edited by Matthew Santamaria and Janice Quirt
Canadian model Kathryn Jordan, from Annapolis Valley, Nova Scotia, wants the world to know that nobody is alone in the battle against Huntington disease (HD).
HD is a hereditary, neurodegenerative illness with physical, cognitive and emotional symptoms for which there is no cure.
When Kathryn was six years old, her mother passed away due to complications from HD.
The symptoms of Huntington disease are described as having ALS, Parkinson’s and Alzheimer’s – all at the same time. They include personality changes, mood swings, depression, forgetfulness, impaired judgement, involuntary movements, slurred speech, weight loss, and difficulty swallowing.
Kathryn considers her father a hero for raising three children for more than ten years alone. “He drove us a couple of hours to the local HD chapter event in Nova Scotia, which was a Go-Kart fundraiser, back in the late 90s.”
When she was 19 years old, she moved out of the house and went to Toronto to pursue a career in modeling. However, Kathryn described her life in her 20’s as a “complete mess” due to trauma from her experiences with her mother and HD.
“I needed serious help to get my health in line,” Kathryn explains. “I had early warning signs of stress-related conditions, including social anxiety, depression, and OCD, as well as being addicted to cigarettes, alcohol, and drugs.”
Kathryn knew that she possessed the gene mutation that leads to HD and started taking action to meet the disease head on. For the past few years, she has been seeing HD specialists for both the disease and her stress-related conditions and attending Toronto Chapter meetings. Kathryn is also on a daily yoga journey and is determined that this disease not take over her life.
“I’m officially an aunt to a beautiful niece – my HD-free sister’s daughter,” Kathryn explains. “I’ve been a part-time model now for about ten years, and I’m always looking for cool side gigs like acting or being a tour guide.” In spite of not being part of a modelling agency, Kathryn is proud to have done both Evan Healy Cosmetics and Buckley’s video and print advertisements.
She aspires to be an international model, as she wants others to know that you can accomplish anything in life. She is also a proud HD advocate and her advice to others is to never let HD hold you back from your dreams.
“I’m not waiting until it’s hard to walk to start this journey.”