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: […]
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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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Last October, I wrote about a potential gene therapy for Huntington’s disease, an illness my family is very familiar with, as my wife, Jill, and daughter, Alexus, are both gene-positive. The experimental treatment is called AMT-130. According to uniQure, the therapy’s developer, top-line data from two Phase 1/2 clinical trials showed that it slowed Huntington’s […]
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There was a time when I measured a good day by how closely it resembled my old life. Could I move fast enough? Think clearly enough? Get everything done on my to-do list? Look “normal” enough in public so that no one stared too long or asked if I was OK? For a long time, […]
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Women with Huntington’s disease are more likely to experience irritability and to be unemployed or working part-time than men with the neurodegenerative condition, according to a small, single-center study in Austria. Men and women with Huntington’s showed similar genetic burden, age at disease onset, and motor symptom severity, suggesting that sex-related differences in Huntington’s may […]
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Several years ago, at a family reunion, I discovered something remarkable about my wife Jill’s approach to difficult conversations that has stayed with me ever since. This discovery has become even more important as Jill deals with the challenges of being gene-positive with Huntington’s disease (HD). At the reunion, Jill sat with her extended family, engaging […]
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I can feel it before anyone says a word. It’s in the pause that comes after I mention Huntington’s disease. It’s in the quick scan of my body, my hands, my face, the way I shift my weight like they’re looking for proof. It’s in the softened voice, the head tilt, the “Oh wow. You’re […]
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The U.S. Food and Drug Administration (FDA) has asked uniQure to conduct an additional clinical trial before submitting an application seeking approval of its experimental gene therapy, AMT-130, for Huntington’s disease. That’s according to a press release from uniQure announcing the final minutes of a Type A meeting held with the agency on Jan. 30 […]
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If there’s one thing Huntington’s disease (HD) has taught me and my wife, Jill, who is gene-positive with the illness, it’s that rest isn’t a reward; it’s a necessity. Between the disease’s relentless advancement, the daily logistics of symptom management, and the invisible emotional toll, we sometimes forget that our batteries need charging, too. HD […]
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The thing about being present in public is that people think it’s just a mindset. Like you decide to show up, take a deep breath, smile, and you’re there — grounded, confident, fine. But when you live with Huntington’s disease, being present in public can feel like a full-time job you don’t get paid for. […]
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Combining pridopidine and FA10, two investigational compounds for Huntington’s disease that target different proteins in the brain, was found to protect against nerve cell death better than either treatment alone. That’s according to a new study that used a cellular model of the genetic disorder to assess the potential benefits of using these two different […]
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