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Life Interrupted

life interruptedThis year has brought several films and books about Huntington disease. Lisa Genova’s Inside the O’Briens, a novel about a family that discovers HD runs through it, published in April, and Lucy Walker’s The Lion’s Mouth Opens, a nonfiction short film following a young woman finding out whether she carries the gene that causes HD, aired on HBO in June, and WeHaveAFace.org launched its documentary project detailing the impact of HD, The Huntington Disease Project: Removing the Mask, in June, as well.

Now, our partners at Help4HD International, Inc., have published Life Interrupted, the stories of 12 people with HD and their caregivers. The stories detail the impact of living with HD on those with the disease and on everyone else around them.

Here is the book description:

Living the unimaginable, twelve Huntington’s disease patients and caregivers share true stories of struggle, devastation, and life-shattering events as they travel the journey that is HD. Along the way, you’ll meet ordinary people who develop extraordinary strength, courage, and perseverance as they try to counterbalance the chaos of lives falling apart as HD shows up like an out-of-control wrecking ball. One woman struggles for years to find her biological family, then discovers more than she expected. Agonizing parents watch helplessly as their children endure years of pain, lose every bit of their quality of life, and die far too soon, some from the juvenile form of HD. Couples fall in love, marry, and start their families just in time for this horrific disease to step in and rip everything away, eventually taking their soulmates’ lives and leaving them with the knowledge that their children, too, may face the same terrible fate. Witness the strength of these families as they rise to the challenge and advocate to be the last generation ever to live with the horrors of Huntington’s disease, a genetic neurodegenerative disease that has often been called the worst disease known to mankind.

To learn more about the book, click here.

What HSG Means to Jenna

What does HSG mean to you?

Being a member of such a focused, bright, and motivated group,  is very inspiring and energizes me as we are all aiming to achieve great goals of finding better therapies for HD patients and families. I feel honored to be a part of the HSG and consider us all a big family!

What’s the most meaningful aspect of working with HD patients?

The most meaningful aspect of my job is the relationships I am able to develop with the patients and families. While HD can be challenging, I feel these patients and families really entrust a great deal of their personal lives with us as their providers, and I’m privileged to be involved in their care. I am also able to learn a tremendous amount by listening to both patients and families, and sometimes that is really what they want and need more than anything. As I reflect on my work with HD, one of my favorite quotes by William James comes to mind-“Act as if what you do makes a difference. It does.

Jenna Smith, RN, BSN

Research & Clinic Coordinator
UAB | The University of Alabama at Birmingham
Birmingham, AL

What HSG Means to Martha

What does HSG mean to you?

marthanance

The HSG, simply stated, represents the best hope for better treatments, hopefully disease-modifying treatments, for HD. The changes taking place within the HSG, broadening its membership base, will push this effort faster, by bringing in more people-power! I am hoping for more ideas, more connections, more rapid communication, novel approaches, and a more rapid pace of discovery!

What’s the most meaningful aspect of working with HD patients?

If you connect properly with a patient and family, if you give them a solid piece of ground to stand on–they know what HD is and does and what to expect, and you manage their symptoms as well as you can, and if they know that you will be there for them throughout the course of their disease–if you do those things, then the patients and their families will use their own energy and skills and creativity to live their lives to the fullest, and maybe even to pull other less fortunate patients along with them. I have been privileged to know some remarkable people over my years working in HD.

Martha Nance, MD

Director, Huntington Disease Clinic
Hennepin County Medical Center
Minneapolis, MN

What HSG Means to Julie

What does HSG mean to you?

stout​HSG means we can amplify our individual efforts by working together to be I strategic, to progress HD clinical research as rapidly as possible, and to save time and money by sharing our expertise and ​insights about how to constantly improve practices that will help us find treatments for HD.

What’s the most meaningful aspect of working with HD patients?   

​For me the draw of HD is the family. I am endlessly compelled by the generosity with which families care for those family members who have HD, and the resilience many families show under such challenging circumstances.​

I am also encouraged by the positive attitude and grace that many people with HD show​ in the face of such significant personal health challenges.

Julie C. Stout, PhD

Professor, School of Psychological Sciences
Faculty of Medicine, Nursing and Health Sciences
Monash University, Clayton Campus

What HSG Means to Claudia

What does HSG mean to you?

testaWorking with top researchers on a common goal is exciting and rewarding. HSG means bringing accomplished research teams together into a smart, welcoming community – it’s motivating to be a part of that.

What’s the most meaningful aspect of working with HD patients?

The impact of HD on patients and families is clearly motivating to all who work in the field. I decided to take that question in a different direction. This is on our movement disorders center website: It didn’t take me long as a physician-scientist to realize that patients are my best teachers. I owe my entire approach to clinical care and clinical research to HD patients. From exploding my expectations on how people react to genetic information, to viewing clinical trials as collaborations between many stakeholders including patients, the things I’ve been privileged to learn from HD patients influence every day.

Claudia M Testa, MD, PhD

Associate Professor, VCU Department of Neurology
Huntington Disease Program Director, VCU Parkinson’s & Movement Disorders Center
Joan Massey Chair in Clinical Parkinson’s Disease

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