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Impact & challenges

People with Huntington's disease and their families confront numerous problems throughout their lives. Many young people grow up under the shadow of HD, confronted with difficult decisions about raising a family and genetic testing. Many people also care for family who have HD while also worrying about getting the disease.


Those suffering symptoms, those who have tested positive but do not yet have symptoms, persons at risk of developing Huntington's, family members of those experiencing symptoms, and those who have tested negative are all affected by the condition.


MENTAL HEALTH AND QUALITY OF LIFE


Huntington's disease can significantly limit both the patient and their families' ability to work.


The results of a community survey conducted in the United Kingdom as part of the Huntington's Disease Alliance network revealed that:


• Caregivers reported that HD had a detrimental influence on their loved one's emotional well-being in 98% of cases, and that the condition had permanently altered their connection in 88% of cases.


• 100% of individuals who tested negative for the gene who have, or have had, a parent or relative who has had more advanced stages of Huntington's indicated it has had a terrible influence on their life, with 70% saying it has been extremely tough or life-ruining.


• 84% of those with a positive test but no symptoms are concerned about whether to disclose their Huntington's disease status, and 83% believe that those close to them do not understand when they disclose their Huntington's disease status.


• Those who have HD experience a lot of stigma and discrimination. More than half (55%) of caregivers report that their loved one has been wrongfully accused of being drunk or using drugs owing to HD symptoms.

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