Amelia D Moser1, Eric Epping1, Patricia Espe-Pfeifer2, Erin Martin1, Leah Zhorne3, Katherine Mathews3, Martha Nance4, Denise Hudgell5, Oliver Quarrell6, Peg Nopoulos7. 1. Department of Psychiatry, University of Iowa Carver College of Medicine, Iowa City, IA, USA. 2. Departments of Psychiatry & Pediatrics, University of Iowa Carver College of Medicine, Iowa City, IA, USA. 3. Departments of Pediatrics & Neurology, University of Iowa Carver College of Medicine, Iowa City, IA, USA. 4. Struthers Parkinson's Center, Minneapolis, MN, USA. 5. Help4HD International, Santa Maria, CA, USA. 6. Department of Clinical Genetics, Sheffield Children's Hospital, Sheffield, UK. 7. Departments of Psychiatry, Pediatrics, & Neurology, University of Iowa Carver College of Medicine, Iowa City, IA, USA.
Abstract
AIM: The symptoms of Huntington's disease are well known, yet the symptoms of juvenile Huntington's disease (JHD) are less established due to its rarity. The study examined a cluster of symptoms considered to be common, but under-recognized in JHD: pain, itching, sleeping difficulties, psychosis and tics. MATERIALS & METHODS: A symptom survey was constructed using the online tool Qualtrics and dispersed to JHD caregivers through websites. RESULTS: A total of 33 surveys were completed. Disrupted sleep was the most prevalent symptom (87%), followed by tics (78%), pain (69%), itching (60%) and psychosis (39%). CONCLUSION: Despite limitations, the study supports that there are symptoms in the JHD population that are not considered classic, however, are common and significant for patients and caregivers.
AIM: The symptoms of Huntington's disease are well known, yet the symptoms of juvenile Huntington's disease (JHD) are less established due to its rarity. The study examined a cluster of symptoms considered to be common, but under-recognized in JHD: pain, itching, sleeping difficulties, psychosis and tics. MATERIALS & METHODS: A symptom survey was constructed using the online tool Qualtrics and dispersed to JHD caregivers through websites. RESULTS: A total of 33 surveys were completed. Disrupted sleep was the most prevalent symptom (87%), followed by tics (78%), pain (69%), itching (60%) and psychosis (39%). CONCLUSION: Despite limitations, the study supports that there are symptoms in the JHD population that are not considered classic, however, are common and significant for patients and caregivers.
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