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National Huntington's Disease Conference 2018

The New Zealand National Huntington’s disease Conference, hosted by the Huntington’s Disease Association of Auckland (HDAA), was held on the 4th and 5th of May. The conference brings together HD researchers, clinicians, carers, patients and their families from around the country.

In this blog post we will cover some of the most popular talks from the conference, however if you want to hear take home messages from all the talks check out our collection of live tweets from the conference here: http://wke.lt/w/s/u7l7Q

Review: Do you really want to know?

‘Do you really want to know?’ is a documentary by John Zaritsky about genetic testing for Huntington’s disease. It follows people who have each gone through the genetic testing process. The documentary gives you an open look into the impact Huntington’s has had on these people’s lives and what the test, negative or positive, has meant for them.

As a whole it is a beautifully told series of highly personal stories which provides a human face to the idea of Huntington’s disease. If you are at risk and considering being tested, or if you want to introduce another person to Huntington’s disease, then this is a very good documentary to watch.

However, one aspect of the documentary did feel a little off to me personally. The first fifteen minutes or so are a bit misleading in terms of the overall tone of the documentary. In this opening part of the video we’re confronted by these very sad introductory stories, combined with intentionally sad music, and blue/grey filters which really try to hammer in the idea that you should feel upset with what you’re watching.

That kind of story telling can be very distancing. It’s a sign early on that something is going to be upsetting and gives people the choice to either engage or to shut down emotionally, and I think that really goes against what the documentary as a whole is trying to do. Slightly further along in the documentary you’ll find that the tone is guided primarily by the stories these individuals and families are telling, which feels much more natural and inviting after you’ve passed that initial part of the story.

‘Do you really want to know?’ deals with the myriad of different aspects that come not only with having the genetic test, but also being part of a family with Huntington’s disease. It does an incredible job of establishing what these people have dealt with in the past, what they continue to deal with, and what they expect from their futures.

So often you will see stories like these which focus on the determination and fearlessness of an at risk group, and while this documentary does show that, it also shows you the rest of the experience: The guilt, and the fear, and the anxiety that comes with a life spent waiting for the worst. It reminds us all that being strong and being afraid aren’t mutually exclusive.

In a very honest way this documentary tells the stories of people with Huntington’s disease, and I would absolutely recommend that if you have the chance to watch it that you do.

 

More information is available at: http://www.doyoureallywanttoknowfilm.com

 

About the Author

Blaise is a science writer for the Brain Health Research Centre at the University of Otago, and a certified member of the Australasian Medical Writers Association. She has studied psychology and neuroscience, and her aim is to raise awareness for neurological and psychological illnesses. Blaise is driven by a desire to make scientific information accessible and understandable to both the general public and to those impacted by these illnesses.

Review: The Inheritance Documentary

‘The Inheritance’ is a documentary which follows Bridget Lyon and her family through their journey with Huntington’s disease. We trace their family line from an insane asylum in Aberdeenshire to the shores of Wellington. This journey, which takes us forward hundreds of years, brings us to Bridget’s mother, Judy, who is living through the final phase of the disease. This isn’t a story of acceptance or overcoming, it’s a story about love and family and how you fight to keep them in the face of a disease like Huntington’s.

Bridget touches on the myriad facets of the disease, from stress to science, she tells you the story of Huntington’s. What makes this documentary so impactful is Bridget’s ability to provide you with all this abstract background information about Huntington’s and then show you the reality of the disease. The information takes hold because we can see what it has meant for her mother.

It is a very effective way of providing an anchor for information. The viewer is informed and prepared before being confronted by the clips of Judy, which makes it much easier to accept what we’re seeing and empathise with it. By the end of the documentary you feel as though you know these people, as though you can understand their struggle, their frustration, and their unstable relationship with hope.

As a society we are used to trying to cheer people up, putting on a brave face and reassuring people that everything will be okay. Huntington’s has made the Lyon family immune to that sentiment. Bridget shows us old videos of her mother, taking us through the years until a woman who was once highly verbal and active and engaged with life becomes an immobile woman whose few words are cruel. She teaches the viewer about the reality of Huntington’s the same way she learned, she shows us how the disease stole her mother. So when a prominent Huntington’s researcher encourages her to not give up on hope it is easy to understand the resistance in her response. She is willing to fight this disease, but she knows that she will lose.

This documentary does a fantastic job of showing the raw determination of Bridget and her family, but it also makes sure that the viewer understands the inevitability that they’re facing. She is afraid, for her parents, her children, her siblings, and herself but there is nothing to be done so she keeps fighting. That balance of determination and fear, that is what makes this documentary so effective. When you’re ready, go and see it.

 

More information about ‘The Inheritance’ can be found here:  https://www.facebook.com/TheInheritanceDocumentary/

 

About the Author

Blaise is a science writer for the Brain Health Research Centre at the University of Otago, and a certified member of the Australasian Medical Writers Association. She has studied psychology and neuroscience, and her aim is to raise awareness for neurological and psychological illnesses. Blaise is driven by a desire to make scientific information accessible and understandable to both the general public and to those impacted by these illnesses.
 

The Inheritance screening

The Inheritance screening

The Inheritance is an emotional, yet inspiring, documentary following the lives of a Wellington family affected by Huntington’s disease (HD). The film gives great insights into the reality of living with HD, and caring for a loved one with HD. It also highlights the resilience of this family, and leaves an uplifting message of hope and determination.