Raising awareness of Huntington’s disease in May

The month of May is dedicated to raising awareness for Huntington’s disease  ̶  the genetic neuro degenerative disorder that causes uncontrolled movements, psychological /emotional problems, and loss of thinking ability (cognition).

This special month is devoted to bringing much-needed attention to the impacts of Huntington’s Disease, focusing on knowledge, education, empowerment and action and to draw the attention of policymakers, public authorities, industry representatives, scientists, and health professionals.

What is Huntington’s disease?

Huntington’s disease is an inherited disease that causes the progressive breakdown of nerve cells in the brain. It effects both males and females and people from all ethnic backgrounds.

The disease is directly inherited through an abnormality on chromosome 4. Therefore, if you have a parent with Huntington’s disease you have a 50% chance that you may also develop the symptoms of the disease. Genetic screening is available for those who may be at risk.

Huntington’s disease symptoms most commonly appear in adults aged in their thirties or forties. Early signs and symptoms can include irritability, depression, small involuntary movements, poor coordination, and trouble learning new information or making decisions.

How the disease and its symptoms progress vary between each individual and is unpredictable at best ̶as is the life expectancy of those diagnosed with the disease. The disease has a global and severe impact on all aspects of the life of the person who living with it and in turn their families and support networks.

There is currently no cure for Huntington’s disease, with the goal of treatments being to manage the symptoms of the disease and help people function for as long and as comfortably as possible.

Supporting people with Huntington’s disease at Yooralla

Yooralla has been supporting people with Huntington’s disease and other neurological disabilities at our Neurological Support Services (NSS) in Eastern Melbourne since December 2021. The service was originally established in 1981.

The NSS houses have a state-wide reputation for our expertise in the management and care for people with progressive neurological disorders

The disability support workers and nurses who work at the sites are trained to deliver high intensity care. They have training in managing behaviours of concern, complex bowel management, urinary catheter care, dysphagia, mealtime management, Enteral feeding and tracheostomy care.

Read more about Yooralla’s NSS houses.

How can I get involved?

There are many ways you can get involved in Huntington’s Awareness month.

There are a number of events taking place across the month, including:

• Light it Up 4 HD: Melbourne and other cities across the world will light up iconic buildings around the world to help shine a light on Huntington’s disease.
• Move 4 HD: a unique gathering that aims to encourage our community to participate in physical, cognitive and social activity, all of which have been shown by research to slow and delay the progression of HD symptoms. In an afternoon of dance fitness, this awareness-raising event will celebrate a person’s ability to move and shift our focus from inability to ability.
• Go Blue on May 22: is an awareness-raising initiative that is a fun way to get involved and show your support for people living with Huntington’s disease, by wearing blue clothing, decorating homes and offices blue and any other way that shows your support of people living with Huntington’s disease.
• In Memory: a special memorial service where members of the Huntington’s community can acknowledge, share and express their grief associated with losing someone to HD.

Residents and staff at our NSS service will wear blue on May 22 to bring attention to Huntington’s Disease. You can also find out more about how to get involved on the Huntington’s Victoria website.

To learn more about how Yooralla is supporting people living with Huntington’s disease, contact Maree Maher, Clinical Operations Manager on maree.maher@yooralla.com.au.