When you first meet Jamie, you will notice her warmth, smile, and genuine interest in those around her. We are excited about what this means for Help 4 HD as we grow and support more families yearly! You can reach Jamie through Help 4 HD's 'HD Database.'
HD Database: https://digitalgrowthfirm.adalo.com/help4hd-database?target=998942e43ce445e7a8ed43cc51862f42¶ms=%7B%7D
Contact Jamie Holloway and Anna Lunsford: Help4HD Database (adalo.com)
"I remember looking at the test results for my father. CAG Score 42. It was at that moment that I knew we finally had a diagnosis. He had Huntington's Disease, and he was the first in our family to be diagnosed. Within the year, I sat in the waiting room awaiting my results from pre-genetic testing. CAG Score 44. A relief rushed over me because I had spent the last weeks dwelling over how I would respond to a much higher CAG Score. From my limited research, a CAG repeat of 44 meant that I would at least get to finish raising my young children and take care of my father through his illness. A CAG of 44 meant that I still had time. On the way home, I went directly to the internet, looking for as much information as I could find about "Age of Onset" and "CAG 44." At first, it was a natural curiosity, but as time passed- I found myself becoming a bit obsessed. If the graphs were correct, then I could onset "any day." During this time, I felt immense internal conflict.. on one side, I had not shown symptoms of HD- so I felt I should be grateful. On the other side, I felt like I was living on an imaginary clock, watching my father deteriorate and grieving that, at best- I would suffer the same fate. When I connected with members of the Huntington's Disease Community, I would introduce myself...I'm Jamie and my CAG Score is 44. It was as if I believed that by providing my CAG score, I proved why I belonged in this world of HD that was so new to me. As my father progressed in his disease, I felt as if I was living with two separate identities.. a caregiver to my sweet Daddy and Jamie, whose CAG is 44.What I realized during this time was that it didn't matter what my- or my father's- CAG repeat was. My family was affected by HD. I was affected by HD, and I didn't need to label myself in order to be worthy of finding or providing support in this community. I am not Jamie CAG Score of 44 because HD is not my identity. A CAG score will not tell me the exact date of my onset or the date of my death. It doesn't add or retract value to my lived experiences or my feelings throughout my journey. While there is much we do not have control over, we do have the ability to change this narrative. We are all unified in this one truth... we are all impacted by Huntington's Disease. So, in closing, let me introduce myself. My name is Jamie Holloway, and I am impacted by Huntington's Disease."
-Jamie Holloway
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