Broadening Global Awareness
of
Huntington's Disease and Juvenile Huntington's Disease
Nutrition
Nutrition is essential for every HD/JHD patient!
The Huntington's Disease Society of America (HDSA) has provided vital information about nutrition for Huntington's patients. Please review the information to better understand the necessity of proper nutrition.
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Nutrition in HD/JHD
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Helpful Kitchen Tools
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How to Increase Calories
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Nutrition and each stage of the disease.
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Downloadable documents
"For many caregivers of people with HD, there comes a point where caring for your loved one at home is no longer possible. This can be due to many reasons, including being unable to dedicate the time to care or coordinate care for your loved one, being unable to manage the complex needs of caring for your loved one, or being burnt out from the caregiving process. It is at this point that many people start looking into the option of placing their loved one in a long-term care facility. Click the links found on this page for guidance and resources. For more information on long-term care or to be connected to local resources, please feel free to contact the HDSA National Helpline (800) 345-HDSA, or email the HDSA directly - hdsainfo@hdsa.org."
"If someone you care about has been diagnosed with Huntington’s disease (hd), this guide has been written for you. In these pages, we will cover some of the major symptoms of hd and how the symptoms will change over time. We will also offer suggestions and strategies for coping with the daily challenges presented by hd. We have drawn from the experiences of countless other hd families and the medical professionals who serve them. As a caretaker, you have an essential role to play in your loved one’s life and care. This guide was developed to help support you during the journey that is hd." - HDSA
Treatment Algorithms
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PLOS Complete Documentation:
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Algorithm for the Pharmacologic Treatment of Obsessive-Compulsive Behaviors in Huntington’s Disease
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Algorithm for the Pharmacologic Treatment of Irritability in Huntington’s Disease
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Algorithm for the Pharmacologic Treatment of Chorea in Huntington’s Disease
Get the most accurate information about SSA Disability!
For accurate information about the SSA disability process, reach out to Allison Bartlett directly at abartlett@hdsa.org
Allison Bartlett – HDSA’s Disability Expert
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Watch WeHaveAFace TV Episode with Allison Bartlett!
Aam Hubers: "Published studies suggest that suicide is 2-8 times more common in HD than the general population. HD patients thoughts of suicide seem to occur at a stage when they are losing their independence and becoming more dependent on care. Because existing information was sparse, Hubers set out to study a large number of HD patients across time to understand suicide in HD. Hubers wonders - what factors lead to HD mutation carriers thinking of, or attempting, suicide? About 20% of HD mutation carriers studied by Hubers, whether or not they have symptoms of HD, thought of suicide in the last month. The studies Hubers is conducting suggest that HD patients who report being depressed seem to have higher risk of suicide. Hubers recommends HD patients with depression should be carefully watched for signs of thinking of suicide, based on increased risk." Via HDBuzz - World Congress 2013.
You are not alone! You are important! Please reach out and call the National Suicide Prevention Lifeline! Living with Huntington's disease is very difficult, but you are important! Reach out to a loved one or the hotline!
