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Old 13-02-17, 09:58 PM   #9
Allan
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Join Date: Sep 2012
Location: Hastings, East Sussex, UK
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Default Re: Services for Juvenile Huntington’s Disease - Update

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Hi everyone

There’s no current news that I’m aware of from the Services for Juvenile Huntington’s Disease Project.

Neither does there seem to be much current stuff written on the research into JHD or on the Health & Social Care of youngsters with JHD. In 2008, Aimee Aubeeluck & Helen Brewer described Juvenile Huntington’s disease as “a rare condition, with only about 5-10% of Huntington’s disease cases occurring in individuals under the age of 20 years.”

This figure suggests that, in the UK at any one time, there might be less than 300 - 700 children with the disease. The upper age of 20 is arbitrary and 18 has also been labelled as the upper age cut-off. So the number count will vary.

The most common presenting symptoms of JHD in the first decade of life are declining cognitive function, behavioural disturbance, ADHD-type problems at school, rigidity and stiffness, awkwardness in walking, speech difficulty, oropharyngeal dysfunction and seizures.

The problem here, in my opinion, is that the medical, clinical and scientific professions don’t deal or cope with the daily issues of the observational, emotional and not-so-wellbeing that parents of children, who may have the symptoms of JHD, have to contend with.

Here’s a short JHD reading list …

The Juvenile HD Handbook: A Guide for Families and Caregivers [HDSA]

Juvenile Huntington’s Disease [HDSA]

Juvenile Huntington Disease: A Resource for Families, Health Professionals and Caregivers [HSC]

I’m not sure whether this helps or not: https://jhdkids.com

The personal experience of parenting a child with Juvenile Huntington’s Disease: perceptions across Europe [2013]

The Impact of Juvenile Huntington’s Disease on the Family: The Case of a Rare Childhood Condition

Managing juvenile Huntington’s disease [2013]

Caring for a child with Juvenile Huntington’s Disease: helpful and unhelpful support [2007]

Juvenile Huntington’s disease: a population-based study using the General Practice Research Database

The Prevalence of Juvenile Huntington’s Disease: A Review of the Literature and Meta-Analysis

A Case of Juvenile Huntington Disease in a 6-Year-Old Boy

Current Pharmacological Management in Juvenile Huntington’s Disease [2012]

Abnormal Weight and Body Mass Index in Children with Juvenile Huntington’s Disease [2015]

Juvenile Huntington disease in Argentina [2015]

Juvenile Huntington’s disease: a case report and literature review [2010]

Clinical Characteristics of Childhood-Onset (Juvenile) Huntington Disease: Report of 12 Patients and Review of the Literature [2006]

CLINICAL PRESENTATION OF JUVENILE HUNTINGTON DISEASE [2006]

This last document seems to be the most recent:

Juvenile Huntington Disease: Rare But With Psychiatric Implications [2016]

That's all folks!

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