30 years of Huntington Disease Service at Westmead Hospital
Westmead Hospital’s Huntington’s Disease Service has marked its 30th anniversary, commemorating with an event together with the Huntington support association, which reached its 50th year.
For much of the twentieth century, Huntington’s Disease was hidden and often stigmatised.
It was the dogged work from individuals, associations and clinicians in the mid-1970s that brought down the silos and connected families impacted by the neurodegenerative disease.
Huntington’s Disease (HD) is rare, and with that scarcity comes isolation, for what is a devastating disease.
Symptoms begin subtly, most often between the ages of 30-50.
The disease affects the way a person moves, thinks and feels. What begins as a twitch progresses gradually to immobility over decades.
Prof Clement Loy, Director of the Westmead HD Service for the past 16 years, reflected on the history of the service.
“Before the 1970s, there was little specific medical or any other kind of help for HD families,” Clement said.
He paid particular tribute to two women who changed this.
“For almost 40 years, Robyn Kapp OAM, was the backbone of Huntington’s NSW, the patient support association. She was pivotal in the establishment of HD services at Lidcombe Hospital,” Dr Loy said.
“Professor Elizabeth McCusker OAM, founded the first HD clinic at Lidcombe Hospital in 1988.”
With Lidcombe’s closure in 1995, Prof McCusker was determined to establish a multidisciplinary service which would meet HD families’ complex and varied needs and Westmead Hospital answered the call.
When the gene causing HD was finally identified in 1993, it opened the way for people to learn whether they had inherited the disease-causing genetic expansion.
Each child of a parent with the HD gene expansion has a 50/50 chance of inheriting the disease. Adults can undergo testing to find out if they have inherited the disease-causing genetic expansion.
The Westmead HD Service and patient organisation worked alongside geneticists and genetic counsellors to set up genetic services to help the HD community navigate the challenging dilemma of genetic testing.
Today, the Westmead Hospital HD Service continues to provide multidisciplinary neurological and allied health support as well as an outreach service across NSW, conducting clinical trials and observational studies and contributing to national and international research studies.
The 30 year anniversary event, organised by Dr Therese Alting and others, was a chance to pay tribute to those who have and continue in their pursuit to improve the lives of people with this challenging genetic condition.
CEO of Huntington’s Australia Lenni Duffield joined the celebrations at Westmead Hospital and said the support the community gives to one another is paramount.
“Finding your people and your community gives you a sense of hope, that you’re not alone, that people understand, that there’s a level of empathy, and you don’t have to consistently keep repeating your story,” Lenni said.
Huntington’s Australia works with those with symptoms of the disease, estimated to be about 2,200 individuals in Australia as well as those impacted by HD: those at risk, unaffected family members, and those in a caring role.
While a cure continues to evade researchers, there are significant benefits that patients now receive from symptomatic treatments and much hope in current genetic trials.