Monday 10 September 2018
Royal Society of Medicine
1 Wimpole Street
Medicine and Me, HDdennomore Initiative
3 CPD Points
This afternoon meeting will focus on the psychological trauma of children in Huntington's families. You'll hear highlights from both professionals and family members.
Professor Hugh Rickards, a Clinical Neuropsychiatrist:
“The child will often take on caring responsibilities for the parent, which can result in stress and problems in their own development. They may suffer bullying and victimisation through having a parent who appears ill (or intoxicated) and often develop a huge sense of loyalty to their HD parent and will often jeopardise their own futures in the cause of that loyalty.
Children may have to experience loss or separation in relation to the HD parent, either through marital breakdown, hospital admission, child protection or death.
The biggest problems are anxiety and depression. However, there are more complex problems with attachment that may arise too. Academic progress might be affected and that affects all sorts of other areas including self-esteem and economic potential.”
HD family members will be speaking talk of hidden drug dependency and other addictions, and constant lack of attention;
“My dad’s oldest sister also had HD. She was the oldest of the siblings and the head of the house. She was very involved in looking after her own mother when she had HD. Due to the lack of awareness and understanding of the early behavioural and cognitive changes that can occur with HD, her children were neglected. My aunt would spend all her time up with my granny to the point where the children weren’t fed. It also has come out from her daughter more recently that she was quite emotionally abusive towards her. My cousin definitely acts like someone who has been psychologically abused as a child.”
Despite anecdotal evidence that these problems are absolutely typical - happening in more HD families than not - no data or statistics can be referred to; the underlying problem is so hidden that there has never been any relevant research.
Patients, their carers and family members attend for free. Medical students and trainee doctors/trainee healthcare professionals can also attend Medicine and me meetings for free.
RSM member rates: £15 - £45
Non member rates: £25 - £75
*Programme is subject to change
Registration, tea and coffee
Sir Michael Rawlins, Past President, Royal Society of Medicine
Professor Sir Michael Rawlins
What is Huntington’s disease?
Dr Nancy Sabin Wexler, President, Hereditary Disease Foundation
Patient perspective: Living with a parent with Huntington's disease
Mr Matt Ellison, Huntington's Disease family member and Founder, Huntington's Disease Youth Organization
Ms Cath Stanley, Chief Executive, Huntington's Disease Association
Miss Kaji Sritharan, Associate Dean, Royal Society of Medicine
Me and Huntington's disease
Mr Mark Newnham
Stress, anxiety and depression management
Professor Hugh Rickards, Consultant, Neuropsychiatry, University of Birmingham
The fallout of juvenile Huntington's disease
Ms Helen Santini, Specialist Advisor, Juvenile Huntington's Disease, Huntington’s Disease Association
Tea and coffee break
Mr Martin Bailey, Vice President, Royal Society of Medicine
Bridging the gap: A perspective from a Huntington's disease family member turn Huntington's disease researcher
Ms Lauren Byrne, Research Assistant, University College London
The first successful huntingtin-lowering trial: Results and what’s next?
Dr Edward Wild, Principal Clinical Research Associate, Huntington’s Disease Centre, University College London
Mr Charles Sabine, Television Journalist
Professor Sir Michael Rawlins
Close of meeting
View rates for all membership types:View rates
For information on this event, contact Charlotte MannTel: 020 7290 3919 Email: firstname.lastname@example.org