HDCaregivers


HDCaregivers is designed to be a safe haven for caregivers of those with Huntington's Disease. To join please visit HDCaregiver's at Yahoo Groups.

Why Does The Group Exist?

Members are encouraged to honestly express their feelings and situations with others who have "been there and done that" as well as with those who are anticipating similar situations. The goal is to provide a POSITIVE supportive environment.

Who Can Join?

A caregiver is defined as someone who is actively caring for their loved one with Huntington's Disease at home, or in partnership with an assisted living facility, a nursing home, Hospice, or other care environment. Long distance caregivers are welcome to join as well as those who have lost their loved one to HD but were caregivers in the past. We understand that some caregivers are also at risk or gene positive and will want to join the list to find support.

What Is Expected?

This is a group that respects the need to share both joys and frustrations in every topic related to caring for a person with HD. We have zero tolerance for individuals that cause dissension in our group. If there are comments made on the list that disturb someone, respectful private messages are urged.Members can always sign off recognizing this is not an appropriate group for their situation. Flames and disruptive messages will not be tolerated and those who engage in such behavior are subject to being banned.

Where To Find Information About Huntington's Disease

The Internet has a tremendous number of sites related to Huntington's Disease. The most comprehensive list of sites, articles, stories and more can be found at the Huntington's Advocacy Group.

Books about Huntington's Disease

Portraits of Huntington's by Carmen Leal
Faces of Huntington's by Carmen Leal
Mapping Fate by Alice Wexler
Huntington's Disease. by Oliver Quarrell


Could I Have This Dance? by Harry Kraus, MD.

This is the best fiction plot involving Huntington's Disease I have ever read. Dr. Kraus did an superb job with his research to be able to include so many issues that invariably arise when dealing with this neurological disease. His portrayal of the young intern, Claire, struggling with being at risk for a genetic disease, was dead on. He captured many issues that one has to consider when deciding to have genetic testing. Issues such as discrimination, insurance, having kids, future job performance, her relationship with her fiance, and many more are covered in Could I Have This Dance? His descriptions of the physical and mental symptoms of Huntington's Disease were excellent.

I enjoyed the plot and found myself thinking of people I know who need to read the book. As the author of two non-fiction books about Huntington's Disease and a frequent speaker at HD conferences, I was impressed with the details and how well he wove them into the plot. I was a full time caregiver for husband with HD and the founder and facilitator for HDCaregivers, an online support group for those who caregive loved ones with Huntington's Disease. Because of my continued writing and speaking to HD groups I am often asked to endorse books that have some connection to Huntington's Disease. I usually find major flaws or omissions in these books and am reluctant to endorse them. I was pleasantly surprised to be able to read and enjoy Could I Have This Dance? and to be able to give it a five star rating.

For too many years Christian fiction was boring, badly written or didn't ring with authenticity. What a delight to find that in recent years Christian fiction has changed for the better. Dr. Kraus did an excellent job of weaving faith issues into the plot without being preachy or heavy handed. So often it is when a crisis arises that one begins to question God and why bad things happen to good people. Even non Christians should be able to read this book without flinching because Could I Have This Dance? shows a young woman struggling with sin and with her relationship with God, just like we all do.

The plot moves at a nice pace and has enough tension and twists to satisfy any reader.

Thank you, Dr. Kraus for creating an wonderful book that I am excited to share with the thousands of families suffering with Huntington's. I also hope millions who have never heard of HD will read this book because it is an honest, well written look at the issues surrounding Huntington's Disease. It is also portrays flawed human beings and how much we need a sovereign God.

Amazon.com carries over a million books. Try the search engine below to locate and buy more books about Huntington's Disease.

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A Brief Overview of Huntington's Disease.

Huntington's Disease (HD) is an inherited, degenerative brain disorder which results in an eventual loss of both mental and physical control. The disease is also known as Huntington's Chorea. Chorea means "dance-like movements" and refers to the uncontrolled motions often associated with the disease.

Over a ten to twenty year period, the person with HD progressivloses the ability to think, speak, and walk.At present, there is no effective treatment or cure. Although medications can give relief to some symptoms, no drug can stop the steady progression of the disease.

Symptoms

Early symptoms appear slowly, but become more severe as the disease progresses. Various symptoms include:


Some individuals with HD may exhibit other symptoms including:
 


The person's knowledge base usually remains unaffected. Each person is affected differently, even from one family member to another. The symptoms vary and can appear at different stages of the disease. Furthermore, people with HD do not usually experience all of the symptoms.
 

Affected Population

Huntington's Disease is hereditary. Each child of an affected parent has a 50% chance of inheriting the disorder and is said to be at-risk. The HD gene does not skip generations: if you do not inherit HD, you cannot pass it on. Onset generally occurs between the ages of thirty and fifty. The average age of onset is thirty-eight. However, children as young as two and adults as old as eighty have developed HD. The earlier the onset, the more rapid the progression. HD affects both sexes and crosses all races and ethnic backgrounds.
 

Prevalence

Huntington's Disease was once considered rare, but is now recognized as one of the most common hereditary disease. Although HD is inherited, many families are still being diagnosed that never suspected it was present; often simultaneously placing three or more generations at risk. This can happen because of misdiagnosis, unrelated premature death of the affected individual, divorce and loss of contact with the affected person, unknowing adoption of an at-risk person, or concealment of the diagnosis from other family members.

It is conservatively estimated that at least 30,000 people in the U.S. alone have the disorder, with at least another 150,000 people at-risk of developing the disease. HD creates a ripple effect because multiple generations in the same family, and many relatives in the extended family, are likely to experience the disease and its consequences. It is therefore estimated that 1 in 1,000 Americans may be directly affected by Huntington's Disease.

Research

Many doctors, scientists, and geneticists are actively studying this disease in hopes of finding a cure.The race for the cure is on. Please give generously so another generation will never suffer from Huntington's Disease.

Huntington's Disease Society of America
orThe Kelly Miller Juvenile HD Fund
158 West 29th St, 7th floor
New York, NY 10001-5300

1-800-345-HDSA

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