Huntington's Disease Society of America
My name is Adriane Terrell and graduated from the School of Social Work at Appalachian State in December of 1997. Since that time I have lost many loved ones to Huntington’s Disease and I have tested positive myself. I am now the Vice President of the North Carolina Chapter of the Huntington’s Disease Society of America. It is my goal to bring awareness, hope and help to those families suffering from this horrible disease with no real treatment or cure.
I am currently enrolled in two research studies at Duke with Dr. Burton Scott and there are some HD resources over at Duke and Wake Forrest but that is all we have in North Carolina and nothing in South Carolina where I lost my grandfather, uncles, mom, and now my first cousin has HD. It sad to see the lack of medical care for patients with Huntington’s in South Carolina, it does not exist. People do not want to talk about Huntington’s it is shunned in my family. We are not going to get very far acting like Huntington’s does not exist, people are making it up, and walking away from love d ones.
Huntington’s very much needs a voice for the patients so the doctors are aware and give help to the families. It is very much a multilayered disease. Patients need a neurologist, psychologist, speech and language therapists, physical therapists for walking and the list just goes on. My mom’s final years of the disease she could not walk, talk, eat, drink, or get out of bed. It was horrible seeing her this way. She was there I could see it in her eyes…..but she could not communicate at all.
I want those final years to be better years for all families, this is my ultimate goal!!