The first participant has been dosed in a large clinical trial testing the experimental oral therapy votoplam (formerly PTC518) in adults with early-stage Huntington’s disease. That’s according to a press release from PTC Therapeutics, the therapy’s original developer, announcing its latest financial results and business updates. Novartis is now leading votoplam’s clinical development and owns […]
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My wife, Jill, who is gene-positive with Huntington’s disease (HD), shared a serious issue she’s been struggling with lately: “I hate showers, and if I hate them now, how will I push through the uncomfortableness when several HD symptoms make it too difficult?” she said. This was not the kind of casual complaint we usually […]
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Editor’s note: This story includes discussion of suicide. If you or someone you know needs help, the national suicide and crisis lifeline in the U.S. is available by calling or texting 988. There is also an online chat at 988lifeline.org. Internationally, find a suicide prevention helpline at findahelpline.com. While Huntington’s Disease Awareness Month brings greater awareness, this […]
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May marks Huntington’s Disease Awareness Month, and organizations worldwide are promoting greater awareness and understanding of the condition, as well as support for patients, families, and caregivers affected by it. Huntington’s disease (HD) is a genetic disorder that causes progressive damage and death to nerve cells in the brain. Huntington’s symptoms include movement disorders, cognitive […]
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Mothers are often told that, once they have a child, their heart now lives outside their body. For years, that line sounded like something stitched on a pillow you buy at a Hallmark store and then feel guilty about never dusting. For my wife, Jill, it stopped being a cliche and became a fact of […]
The post Living in the present, even when Huntington’s reminds us of the future appeared first on Huntington's Disease News.
One of the hardest things Huntington’s disease has taught me is how to accept help without attaching shame to it. I live independently, and I am proud of that. My independence matters deeply to me. It’s not just about paying bills, keeping appointments, or managing my home. It’s about dignity. It’s about knowing that I […]
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Electroencephalography (EEG), a noninvasive test of electrical activity in the brain, may be a useful tool to help track disease progression in Huntington’s disease, as patients tend to show certain characteristic abnormalities that are associated with symptom severity. “EEG may serve as a potential biomarker for early diagnosis and monitoring of Huntington’s,” the researchers wrote. […]
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The first time my wife, Jill, almost cried in front of me, Huntington’s disease (HD) was already part of our story, just not the headline yet. It was there in the background, like a low drumbeat under all the usual early-relationship excitement: new love, big plans, and a future we believed we could completely script ourselves. From […]
The post The boundary that improved communication in our marriage appeared first on Huntington's Disease News.
For a long time, I confused boundaries with rejection. I thought boundaries meant distance. I thought they meant being difficult, cold, or selfish. I thought that if I loved people deeply enough, I should be able to keep showing up, giving, understanding, and absorbing whatever came my way. I believed that being a good person […]
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A new measure, called the Huntington’s Disease-Behavioral Questionnaire (HD-BQ), effectively captures behavioral symptoms in people with Huntington’s disease, as well as differences between patient reports and those of their companions, a study shows. Companions reported more widespread and severe symptoms than patients, particularly in cognitive domains such as concentration, switching thoughts or activities, judgment, and decisiveness. “By […]
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Last month, I walked into our kitchen to find what looked like a crime scene. Blood drops dotted the counter, and my wife, Jill, stood at the sink with bandages wrapped around several fingers, laughing as she rinsed off our newly sharpened knives. My heart sank. My first thought wasn’t about the blood or the […]
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There is a particular kind of exhaustion that comes from being sick and still feeling responsible for everyone else’s comfort. It is one thing to manage Huntington’s disease. It is another thing entirely to manage the emotions, assumptions, awkwardness, and reactions that can swirl around it. Sometimes I walk into a room already carrying enough: […]
The post It’s not my job to be a peacemaker as someone living with Huntington’s appeared first on Huntington's Disease News.
Levels of certain blood markers that are tested as part of routine medical care, such as cholesterol and liver injury indicators, may help predict how fast Huntington’s disease progresses, a new study found. According to the researchers, such routine blood tests “may help anticipating HD [Huntington’s disease] progression.” The results of such testing also “may […]
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The other evening, my wife, Jill, and I were watching a YouTube show that explored how people cope with loss. As the narrator was describing the seven stages of grief — shock, denial, anger, bargaining, depression, acceptance, and hope — Jill clicked the pause button. In our years together, especially since her Huntington’s disease diagnosis, […]
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There is a particular kind of pain that comes from knowing something is wrong in your body and having medical professionals tell you otherwise. For many people living with Huntington’s disease, the road to diagnosis is already long, confusing, and frightening. But for some of us, that road is made even harder by medical gaslighting, […]
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Genistein, a compound found in soy products, was seen to reduce nerve cell damage and improve motor function and coordination in a mouse model of Huntington’s disease — alongside other benefits, which included extending the animals’ lifespan. That’s according to new research by scientists in the U.S. and South Korea, who determined that the beneficial […]
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Intrusive thoughts used to feel like my wife Jill’s own private crime scene, especially after she was diagnosed as being gene-positive for Huntington’s disease. As she describes it, they were the kind of thoughts that no one warns you about, including sudden flashes of worst-case scenarios, images of cognitive decline, and whispers that maybe she […]
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One of the hardest parts of living with Huntington’s disease is when other people don’t believe me when I discuss my health. I’ve spent years being challenged by medical professionals, questioned by strangers, and even pushed out of organizational spaces that were supposed to support people like me. It wasn’t because I don’t have Huntington’s […]
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A small fragment of the huntingtin protein, called HTT1a, may play an important role in the development of Huntington’s disease, the findings of a mouse study suggest. According to the scientists, this protein fragment was seen to trigger the disease in the mice. When researchers blocked the production of this small fragment in the brains […]
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The women in my life — my wife, Jill, and our daughter, Alexus — are the kind who can do absolutely anything they set their minds to. Both would call themselves feminists, not just in words but in the way they live: taking on challenges, speaking their minds, and refusing to let anyone or anything define their limits. […]
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There is a type of grief that isn’t always discussed in the Huntington’s disease community, even though many of us live with it every day. It’s the grief of losing versions of yourself while still being very much alive. I have grieved the loss of some of my abilities. I have grieved the ease with […]
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An interaction between two proteins — one called Rhes and the other Slc4a7 — helps to build tiny tunnels between nerve cells that allow mutant huntingtin protein, the cause of Huntington’s disease, to move from one neuron to another and spread throughout the brain. Those are the findings of a new preclinical study, led by […]
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Rare Disease Week at the end of February reminded me of the time when my wife, Jill, attended a rare disease advocacy panel several years ago. When she arrived home afterward, she was visibly frustrated. As someone diagnosed with Huntington’s disease and as a fierce advocate not only for Huntington’s, but for all rare disease […]
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One of the most exhausting parts of living with Huntington’s disease isn’t always the symptoms. Sometimes it’s having to constantly explain them (or at least try). There’s a phrase many of us with chronic illness have heard far too often: “But you don’t look sick.” People usually say it like it’s a compliment. They think […]
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Roflumilast, an oral therapy approved in the U.S. to treat inflammatory lung disease, was shown to reduce brain inflammation, promote the health of connections between brain cells, and ease symptoms in a rat model of Huntington’s disease. According to the research team, from Cairo University in Egypt, these beneficial effects were driven by reductions in […]
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