The patient perspective on advocacy

Growing up with the shadow of Huntington’s disease (HD) means Seth Rotberg understands the importance of peer support and credible information.

Now partnerships manager at healthcare social network Inspire and member of the Huntington’s Disease Youth Organization’s (HDYO) board of trustees, Seth spoke to Deep Dive about learning to live with a rare disease and his passion to help others do the same.

“My mother was diagnosed when I was 15, but she had been misdiagnosed for five to seven years before that. It is a rare neurological degenerative disease that slowly deteriorates a person’s physical and cognitive abilities. I’d describe it as like having motor neuron disease (ALS), Parkinson’s, and Alzheimer’s all at once.

“It was five years later, at the age of 20, that I decided to go through the genetic testing and I found out I carried the gene. So I’ve known for eight years now about my gene status.”

• Read the article in full in pharmaphorum’s Deep Dive digital magazine