The Impact of Huntington's Disease on Family Life

Experiences of Teens Living in the Shadow of Huntington Disease

“…The findings in this study begin to shine a light on teen experiences in families with HD and how these experiences may challenge these teens' current and future wellbeing as well as influence their current and future decision-making (Forrest et al, 2007;Vamos et al, 2007;Van der Meer et al, 2006). The teens shared experiences and concerns about both of their parents, themselves, their families, and their peer relationships.…”

“…Research studies are now just beginning to explore teen experiences, especially in families with heritable conditions (Holt, 2006;Van der Meer et al, 2006). Three recent studies begin to look beyond the adult experience in families with HD and highlight the need for continued exploration of teen experiences in these families (Forrest, Miedzybrodzka, van Teijlingen, McKee, & Simpson, 2007;Vamos, Hambridge, Edwards, & Conaghan, 2007;Van der Meer et al, 2006). In the first of these studies (Forrest et al, 2007), the participants included some teens, but in general were older (M=21).…”

“…In addition, adult family members may not be able to provide these teens with needed support and guidance due to the effects of HD, family stresses, or coping limitations (Vamos et al, 2007). Health care providers, teachers, and guidance counselors are often the primary adults, other than parents, teens see repeatedly throughout adolescence.…”

Personal Factors Associated with Reported Benefits of Huntington Disease Family History or Genetic Testing

“…Those with a family history of HD who were raised by a parent with HD may be at increased risk for difficulty in establishing close emotional bonds in parent-child relationships (Van der Meer et al, 2006), and some people rate having a parent with HD as being difficult or as splitting the family apart (Vamos et al, 2007).…”

Neuroprotection for Huntington’s Disease: Ready, Set, Slow

“…7,8 There is no therapy proven to delay onset or slow progression, 9,10 and the best current medical care has a positive impact by focusing multidisciplinary attention on symptom management and caregiver support and by maximizing function and quality of life. [11][12][13][14] Because of the early functional decline, the chronic and increasingly intensive care required, and the profound multigenerational impact on entire families, 15 HD disproportionately consumes medical, social, and family resources. The principal target populations for neuroprotective therapies are those who are premanifest (not yet symptomatic but known to possess a huntingtin gene with the causative CAG expansion) as well as those who are manifest (overtly symptomatic), but not yet so advanced that there is a vastly diminished quality of life to preserve.…”