Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > Juvenile Huntington’s Disease

Juvenile Huntington’s Disease Forum concerning all aspects of JHD

 
 
Thread Tools Display Modes
Prev Previous Post   Next Post Next
Old 04-12-14, 04:58 PM   #1
Allan
Approved Member
 
Allan's Avatar
 
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,145
Default JHD - Services Improvement Study

.
Hi everyone

I have been invited to become a lay member of a JHD study/project taking place at Sheffield Children’s NHS Foundation Trust. [see page 18 of the current HDA Newsletter]

The study, led by Dr Oliver Quarrell, will be assessing services for Juvenile Huntington’s Disease.

The study aims to obtain the views of patients, carers and professionals delivering services on the current service provision “when a young person develops JHD”. Working with researchers in the NHS the study will seek to discover what services are being used. What do young people need? What do they value? Are there better ways of delivering services and providing care?

The non-professional, family member’s representations to the Advisory Board will ensure that the project is being steered in an appropriate direction. It is a rare opportunity to place the role of the family Carer in the forefront of “improving services”, initially for young jhd-people.

As soon as I receive information from Dr Quarrell’s team I will be able to gauge who I can represent and what I can do. I hope those of you who have been through this situation will contact me via Private Messaging and give me as much information and detail as you can as to the positives and negatives in this area – and how “the services” can be improved from a family member perspective.

********************************************** ********************************

Juvenile Huntington’s Disease is a rare form of HD and is defined as onset under 20 years of age and represents approximately 1-10% of cases. The younger the age at onset usually gives a higher number of CAG Repeats, ie above 60.

In JHD, particularly in those with onset in the first 10 years, movement disorder [chorea] is less likely to be present and instead, patients are more likely to display rigidity, bradykinesia, dystonia and gait disorder, ie. parkinsonian features. In addition, JHD patients are more likely to develop epilepsy than adult-onset cases. The spectrum of features at presentation can also include ataxia, dysarthria, dysphagia, deterioration in school performance or severe behavioural problems.

.
__________________
New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
Allan is offline   Reply With Quote
 

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 03:02 PM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA