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This week’s blog was written by four Huntington’s disease charities across the UK and Ireland, who are working together to raise awareness of the impact of Huntington’s disease, not just on individuals, but on families too.

The Huntington’s Disease Alliance UK and Ireland (the Scottish Huntington’s Association, the Huntington’s Disease Association Northern Ireland, the Huntington’s Disease Association of Ireland and the Huntington’s Disease Association) launched the Family Matters campaign at the beginning of May 2021 with the hopes of promoting an improved understanding of the unique pressures of the disease upon the families it affects.

Watch Heather, Nikki, Sean and Anna’s stories below and learn more about this brilliant awareness campaign!

About the Family Matters campaign

The Huntington’s Disease Alliance UK and Ireland (the Scottish Huntington’s Association, the Huntington’s Disease Association Northern Ireland, the Huntington’s Disease Association of Ireland and the Huntington’s Disease Association) has developed the Family Matters campaign, which launched at the beginning of May 2021. A campaign survey has highlighted the devastating impact of the disease not just on the individual who has been diagnosed, but also for the whole family. It has highlighted that the community feels that there is extremely limited public awareness of Huntington’s disease, with a lot of people having experienced stigma.

The Family Matters campaign invites those who have experience of Huntington’s to contribute pictures, words and thoughts to a shared digital community space called the Living History Project.

The organisations behind the campaign have heard many stories of families who feel that the healthcare professionals they see lack knowledge and insight into the trials they face. This means that there can be practical barriers to accessing the support needed. While it is recognised that most healthcare professionals in primary health care services rarely encounter Huntington’s disease, there is no doubt that greater awareness and understanding would help families feel less isolated. Healthcare professionals working with affected families are encouraged to take a family-focused approach and consider the psychological burden on the symptomatic person, the family members living at risk, and the family care givers who may be required to support more than one family member over generations. The Family Matters campaign hopes to promote an improved understanding of the unique pressures of the disease upon the families it affects.

For more information, please visit the individual Huntington’s Alliance members websites!

About Huntington’s disease

Huntington’s disease is a hereditary and degenerative brain disorder, which significantly reduces life expectancy. Huntington’s affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate the body’s activities. This leads to progressive deterioration – physically, cognitively, and mentally – until the individual becomes dependent on the help of others. Although encouraging worldwide research is taking place, there is, at present, no cure for Huntington’s disease. However, many of its symptoms can be managed with a combination of medication, multidisciplinary therapies and appropriate support from specialist services.

The majority of people with Huntington’s disease develop movement disorders, but symptoms also include psychiatric problems and cognitive difficulties. Most people develop symptoms in mid-life, although around 10% develop Juvenile Huntington’s disease symptoms before the age of 20, and another 10% have late-onset disease with symptoms emerging after the age of 60. Typically, symptoms gradually get worse over 10 to 25 years. Every child conceived naturally to a parent who has the faulty gene that leads to Huntington’s disease has a 50% chance of inheriting it.

Recent studies suggest that Huntington’s disease has a higher prevalence than initially reported with 14-16 per 100,000 affected in the UK and Ireland. It is believed that misdiagnosis, stigma and a poor understanding of the disease contributed to lower numbers being reported previously.

 

References

1.   Huntington’s Disease Association. What Is Huntington’s Disease. Available at: https://www.hda.org.uk/huntingtons-disease/what-is-huntingtons-disease/symptoms-of-huntingtons-disease [Accessed 14 April 2021]. 

2.  Family Matters Community Survey. Conducted online 23 March to 21 April 2021   

3.  Scottish Huntington’s Association. What Is Huntington’s Disease. Available at: https://hdscotland.org/what-is-huntingtons-disease/ [Accessed 14 April 2021].  

4. Patient Info. Huntington’s Disease. Available at: https://patient.info/doctor/huntingtons-disease-pro [Accessed 21st April 2021]  

5. Huntington’s Disease Association of Ireland. What is Huntington’s Disease? Available at: https://www.huntingtons.ie/What-is-Huntingtons-Disease [Accessed 14 April 2021].  

6. Huntington’s Disease Association Northern Ireland. About HD. Available at: http://www.hdani.org.uk/cgi-bin/generic?instanceID=2 [Accessed 14 April 2021].  

Experience Huntington’s Disease Alliance’s Family Matters campaign

by Guest Contributer time to read: 5 min
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