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HD 101

HD Heroes

Matt and Gina Swanson

Gina’s husband Matt was diagnosed with Huntington’s Disease in 2011 at age 55, but began showing symptoms years prior to his formal diagnosis. Matt had a family history of HD, so Gina was familiar with what HD entailed. As Matt’s HD progressed both his physical and mental health declined. Matt was a pilot, a skydiver, a traveler, and an adventurer, but now that had to change. Gina stepped in as his caregiver, but she struggled to find emotional support, resources to learn about HD, and providers that understood her unique situation.

Matt is now 67 and has in-home hospice care. At this point in their journey, Gina found herself alone and in need of support, but didn’t know where to start. A friend referred Gina to HD Reach, where she was connected with a local contact who could personally relate to her unique situation as a wife and caregiver to someone with HD. Gina found comfort in this connection and decided to attend an in person meet up hosted by HD Reach. Gina was able to connect with others in the HD community, and was welcomed with understanding and positivity. Gina continues to navigate the HD journey with her husband and look towards the future - one of continued research, expanded access to care, and a highly personalized support plan developed in partnership with resources she found at HD Reach.

Gina plans on remaining active in the HD community, while providing care to Matt. Gina now feels empowered and supported, thus regaining a sense of self while being a caregiver. She has once again begun to enjoy painting, cooking, and socializing with others within the HD community. Gina stated “I would encourage anyone in my shoes to take a leap of faith and contact HD Reach. I am no longer alone thanks to HD Reach”.