As the Care Navigator at HD Reach, I work daily with individuals impacted by HD. There are many ways to initiate contact with HD Reach, and we offer many programs and resources to support our clients. Many people reach out to me via email, phone, or text. However, individuals often connect with us via social media platforms, in person events, in HD clinics or just a simple online search. It is my job once they initiate contact with HD Reach to provide the resources, education, support and the connections they need to help them navigate their HD journey.
For example, 6 months ago I had an individual contact me via phone after a brief online search for HD supports in his community. He shared during the first call with me that his mother had passed away from HD, and he had been a caregiver to her for most of his life. He reported feeling traumatized and shamed by his family history of HD. He did not have any family supports and was unaware of how to connect with others in the HD community. He shared his fears of testing and finding out his gene status. He verbalized feeling confused about where to find support and resources specific to HD. He quickly opened up sharing that he was experiencing some possible HD symptoms noticed by his employer which resulted in him being placed on medical leave. He expressed fears about genetic testing and his future, including relationships and finances. We were able to identify the resources and supports he needed that would best support him. He expressed his desire to attend a HD clinic and meet with a provider specializing in HD. He also expressed interest in learning more about his genetic testing options, as well as long-term planning. As Care Navigator, I was able to make a referral to a local HD clinic for his 1st visit as well as a referral to Duke COE for further evaluation. He also completed our Care Assistance Planning Program to address his long-term planning concerns. Over the course of 6 months, he was able to regain a sense of control and comfort as he completed long term planning and is now aware of his testing options, should he decide to test in the future. He was able to receive the support of 2 medical providers specializing in HD via referrals from me at HD Reach. He also regularly attends a local in person meet up hosted by HD Reach to develop social connections within the HD community. He also continues to receive medical care at an HD clinic.
He shared with me at a recent meet up that he was thankful for my support and the connections HD Reach was able to provide to him. At this time, he has returned to work, identified his medical care team, finalized long term planning, and continues to build social connections in the HD community. He is also planning to join HD Reach Game Over! He made 1 phone call to HD Reach and was able to make many CONNECTIONS in the HD COMMUNITY. He now feels supported, educated and empowered with the support of HD Reach.He was able to take advantage of several HD Reach programs such as Care Assistance Planning, In Person Meet Ups, Game Over, the ability to receive referrals to HD medical providers and receive education on genetic testing options.
