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.
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…
Discussion
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…
Discussion
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…
Becoming educated and informed about Huntington’s disease is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your Huntington’s disease journey.
There is no cure for Huntington’s disease yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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