Help 4 HD Live!

“If we want to live and love with our whole hearts, and if we want to engage with the world from a place of worthiness, we have to talk about the things that get in the way- especially shame, fear and vulnerability.” - Brené Brown

Listen now | Episode 19: Part 2 Living with Huntington's Disease | https://lnkd.in/exMzFib5

Lauren and I talk about how a genetic diagnosis can rock a family system and your self-worth and trigger deep-seated feelings of shame. hashtag#Shame—the weightiest of emotions. Too often, it's part of the experience of living as a hashtag#previvor. Lauren Holder, thank you for naming this with me so we can dispel the shame and make more space for whole-hearted living with hashtag#genetic risk.

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Description courtesy of Genetic Frontiers:
When you walk through life for decades facing down an incurable disease, knowing how you might die—as Lauren Holder and I do—it's an excruciating, existential state that's hard to explain and difficult to negotiate. When I talked with Lauren, it was like a bubble of safety closed around us. Because she understood things about my life that few people register. She just got it because she lives it, too. Afterwards I thought, "My people are my fellow #previvors.”

#Previvorship is a fellowship no one wants to join. Ironically, whether we recognize it or not, it's fellowship we are all a part of. We all carry genetic risks. The science of knowing what your genetic risks are—and how you might die—gets more exacting by the day.

We don't talk enough about what it really means to navigate life with predictive, genetic information. The concrete, practical challenges of living with what you learn about your #DNA. And how it feels. So Lauren and I get real in this long-form conversation about what it’s like live with genetic risk, in her case, #Huntington’s, and in mine, #CADASIL.

Listen now | Lauren Holder of Help 4 HD on Genetic Frontiers | Part 1 of 3 https://lnkd.in/eKuarjt2

We talk about the haunting #fear, the sense of diminished self-worth, anticipatory #grief, family #silence, the #judgment from medical providers in moments when we most needed help, and how tortuous the path to #parenting felt. We discuss the deep #emotional work we’ve done over decades to transform our relationship to living with risk. 

We're hanging it all out because I think we both believe there is a better way to live with genetic risk and a better way to care for and support previvors. Thank you, Lauren Holder for being so real, open, and willing to share your story. It’s a gift!

In this episode, we dive deep into the personal and family impacts of genetic testing for Huntington’s disease. Wes, a genetic counselor, joins the conversation to discuss the emotional, psychological, and interpersonal effects of learning your genetic status. The episode explores how test results can impact not only the individual but also family dynamics, relationships, and decisions about sharing information. We also cover important topics such as the risk of passing Huntington’s disease to children, the complexities of testing among siblings and identical twins, and the unique challenges of family planning and reproductive choices for those at risk. Listeners will hear real stories and expert advice about support resources, counseling, and how to build a network to navigate this journey. The conversation is candid and compassionate, offering insight both for those considering genetic testing and for families already living with Huntington’s disease. Whether you’re seeking information, support, or a sense of community, this episode provides valuable understanding and practical advice from both professionals and lived experience.

When you're at risk for Huntington's disease, deciding whether or not to undergo genetic testing is one of the most personal and life-changing decisions you may ever face.
But what happens after you get your results?
On this episode of Help 4 HD Live, I'm joined by a special guest, "Jules," who is sharing her genetic testing journey while choosing to remain anonymous.
For years, Jules wrestled with the decision of whether or not to test. When would she be ready? Did she really want to know? And how would knowing change her life?
Eventually, she reached a point where she felt ready to take that step.
Jules ultimately tested negative for Huntington's disease. But receiving a negative result doesn't necessarily mean the emotional journey ends there.
We talk about what led her to finally pursue testing, the emotions and challenges she experienced along the way, and what life has looked like since learning her results.
Because genetic testing isn't just about getting an answer. It's about everything that comes before it, everything that follows, and learning how to navigate life on the other side of uncertainty.
Whether you've tested positive, tested negative, decided not to test, or are still trying to figure out what's right for you, this is a conversation worth hearing.
💙 There is no right or wrong decision when it comes to genetic testing. There is only the decision that's right for YOU.
🎙️ Join us for an honest, personal conversation about genetic testing, identity, uncertainty, and life after the results.
#Help4HDLive #HuntingtonsDisease #GeneticTesting #LifeAfterTesting #HDCommunity #HDAwareness

In this episode of Help 4 HD Live, host Katie Jackson sits down with Wes, a certified genetic counselor and director of HD Genetics, to explore the complexities of genetic testing for Huntington’s disease. Now in its fourth year, HD Genetics provides remote genetic counseling and testing services for the HD community, supporting families as they navigate difficult decisions around predictive genetic testing. The conversation covers the personal journey of deciding when—or if—to get tested, the emotional and practical implications of positive, negative, or ambiguous results, and the importance of individualized support. Wes explains the different testing methods available, their accuracy, and what test outcomes mean for individuals and their families. The episode also delves into common misconceptions, the role of genetic counseling in managing expectations, and the significance of timing in the decision-making process. Whether you’re considering genetic testing, supporting a loved one, or simply want to better understand Huntington’s disease, this episode offers compassionate guidance and expert insights into one of the most personal choices facing the HD community.

To read/Print the safety planning chapter of the Help 4 HD Toolkit, click here: Help4HD Database

Please visit the Help 4 HD database to see/print the HD Tool Kit end-of-life chapter here:
Help4HD Database

Nancy and Alice are sisters, authors, scholars, and longtime members of the Huntington’s disease community. Their mother, Leonore Wexler, was diagnosed with Huntington’s disease in the late 1960s, at a time when very little was understood about the disease and families affected by HD often faced tremendous stigma and isolation. That diagnosis would profoundly shape both of their lives—but in very different and equally important ways. 

Dr. Nancy Wexler is a pioneering geneticist and one of the most influential figures in the history of Huntington’s disease research. She played a central role in the international research effort in Venezuela that ultimately helped scientists locate the Huntington’s disease gene on chromosome 4, paving the way for the identification of the gene itself in 1993. She has spent decades advancing HD research, advocating for families, and helping transform our understanding of the disease. 

Dr. Alice Wexler is a historian, author, and scholar whose work has explored the human side of that same scientific story—the history of Huntington’s disease, the experiences of families living with genetic risk, and the complicated questions surrounding predictive testing, identity, stigma, and inheritance. She is the author of Mapping Fate: A Memoir of Family, Risk, and Genetic Research and The Woman Who Walked into the Sea: Huntington’s and the Making of a Genetic Disease. 

Together, Nancy and Alice offer something truly unique: two perspectives on the same family history—one that helped change the course of Huntington’s disease science and, at the same time, tells a deeply human story about what it means to live in the shadow of an inherited disease. 

You can purchase Nancy's book here: https://hdfoundation.org/nancy-wexler-memoir/

Social Worker Spotlight with Jamie Holloway
Traveling Tips & Tricks
Host: Katrina Hamel
#HuntingtonsDisease #HD #SocialWorkerSpotlight #Help4HD #Help4HDLive #Travel