{
  "id": 48097,
  "title": "Call for HSE to implement care pathway for Huntington's",
  "url": "https://urgent.news/2026/08/02/call-for-hse-to-implement-care-pathway-for-huntingtons",
  "topic": "world",
  "section": "World",
  "published": "2026-08-02T14:04:20.000Z",
  "source": {
    "name": "RTE News",
    "slug": "rte-news",
    "url": "https://www.rte.ie/news/ireland/2026/0802/1586192-huntingtons-disease/"
  },
  "original_language": "en",
  "account": "A woman whose symptoms of Huntington's disease were first observed over a decade ago has called for the HSE to establish a dedicated care pathway for the rare condition. Huntington's disease is a progressive disorder affecting brain cells, leading to issues with speech, movement, cognition, and mood. In Ireland, approximately 1,000 individuals are estimated to be affected by this condition, with a one-in-two likelihood of the gene being passed to offspring.\n\nSinéad, the woman featured in this case, only received a diagnosis for her mother's Huntington's disease in January 2022, more than a decade after her mother's symptoms began manifesting. Her grandfather was diagnosed with the disease in 2015, but the family was not informed until years later. Sinéad's mother endured various symptoms, such as falls, slurred speech, and loss of motor control, before being eventually diagnosed with Huntington's disease.\n\nDuring her mother's time, Sinéad's grandfather was admitted to a hospital in 2013 due to facial droop, a potential indication of Huntington's disease. However, the necessary test to confirm the diagnosis was not performed. In 2015, a positive test for Huntington's disease was returned but never communicated to the family. Despite this, the hospital's neurology department and their GP failed to inform Sinéad's family of the test results and the diagnosis.\n\nSinéad's mother experienced several adverse events before receiving her diagnosis, including two suicide attempts that required hospitalization. Despite her mother's deteriorating health, she was discharged from the hospital with a pamphlet about the disease and was left to independently research Huntington's disease. Sinéad took the initiative to arrange a care plan based on her mother's diagnosis but found that there was no coordination from the GP side.\n\nProfessor Orla Hardiman, a Consultant Neurologist at Beaumont Hospital in Dublin, describes Huntington's disease as a combination of motor neurone disease, Parkinson's disease, Alzheimer's disease, and frontotemporal dementia with a prolonged course. She stresses the importance of early detection of the condition and its potential impact on families. Approximately 1,000 people in Ireland are believed to have Huntington's disease, with a one-in-two chance of passing the gene to their children. Knowing one's genetic status can enable pre-implantation genetic diagnosis to prevent the condition from being passed on to future generations.\n\nBoth Prof. Hardiman and Sinéad are advocating for enhanced care and services for Huntington's disease patients across the country. They argue that the current system suffers from fragmentation, inadequate genetic services, and a lack of structured care programs for those affected by the disease. Sinéad's family contested the HSE over her mother's care and reached a settlement in March 2025 through mediation, with the hospital apologizing for deficiencies in their care.",
  "summary": "The family of a woman who was diagnosed with Huntington's disease more than a decade after she began displaying symptoms has called for the HSE to implement a care pathway for the disease.",
  "key_points": [],
  "editors_take": null,
  "illustration": null,
  "coverage": {
    "outlets": 1,
    "also_reported_by": []
  },
  "ai_generated": true,
  "disclaimer": "Summaries, key points and the editor’s take are written by software from other outlets’ reporting and may contain errors — always check the linked original."
}