Heather Thurgood Wilmoth has been involved with Huntington’s Disease since her husband, Nathan, was diagnosed in April 2016. Heather has built an amazing support group in her local community, both online and in person.
“When Nathan was diagnosed, we felt really alone. We didn't know anyone like us so we began a social media page to find others in our state who were like us. Challenges have been disease progression. Just as it's hard for him to deal with the changes, it's hard to watch him have to go through but we persevere.”
She is excited to be a Change Champion for PicnicHealth to spread awareness about HD research & to have access to the timeline.
“We love the idea of having all of Nathan's health records in one place and we want to try to fight HD. Even if it doesn't help Nathan, his participation could help others and quite possibly our two children who are both at risk.”
Huntington’s disease is a rare inherited disease that causes the progressive breakdown of nerve cells in the brain. No current treatments can alter the course of HD, which is why it’s so important to study the causes and early symptoms of the disease. This can lead to potentially preventing or helping to treat the disease for a better quality of life. Our aim is to help provide data necessary for the researchers in this field to do just that.
Patients typically access their medical records through patient portals, which are online platforms that allow you to view their health information and communicate with your healthcare providers. Many patient portals are part of an electronic health record (EHR) system used by healthcare providers. While EHR systems are helpful tools for managing records from one facility, requesting prescription refills, or paying bills, they often fall short when consolidating information from different healthcare organizations or participating in research.