Commonly Asked Questions


What Is Huntington's?
Commonly Asked Questions
10 The Most Commonly Asked Questions
Clinical Trials & Research
Advocacy/Donations/Press Info
Clinical Definitions-Terminology
Facing HD~Family Handbook
JHD Handbook-Chapter 1
JHD Info-Stanford Univ.
Physician's Guide To HD
Caring for People with HD
Physical & Occupational Therapy In HD
Understanding Behaviour in HD-Dr. Jane Paulsen
Understanding Behavioral-Dr. Edmond Chiu
Advanced Stages Caregivers Handbook
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - At Risk
At Risk For HD-What Next?
Q&A On Risk of Inheriting JHD
Testing Children
Best Interest of Child?
Crystal Ball?
Parent Hasn't Tested?
Food For Thought
Age & Probability Chart
At-Risk Checklist
SECTION 2 - Genetic Testing
Genetic Testing for HD
Genetic Counseling-In General
Psychological Impact
Intro: Genetics/Genetic Testing
Prenatal & Preimplanation
Prenatal Testing-In General
o Genetic Testing Resources
o Personal Stories
Age of HD Appearance
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
What Kids Are Saying-HD
o HD & Me
JHD-Duration of Illness
JHD-Clinical and Research
JHD Symptoms
Parenting With HD
Patients/Families Coping
Talking With Children About HD
5 Stages of HD
o JHD Resources
SECTION 4 - Possible Symptoms
o Parent Resources
8 Fears of A Chronic Illness
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Attention-Perceptual/Unawareness Physician's Guide
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Communication Problems
Communication Strategies For HD~Jeff Searle
o Communication Resources
Dehydration-Physician's Guide
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
o Depression-Other Resources
-Read If Your Child Is On Antidepressant
Dissociative disorders
Driving - Physician's Guide
o Dyslexia Resources
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
-Seizures in special populations
- Subdural Hematoma Risk In HD
Fevers - Unexplained
GERD (Stomach)
HD Principle Treatments
Hand muscle reflexes in HD
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia-Advanced Stages
- Aspiration Pneumonia
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Swallowing & Nutrition Physician's Guide To HD
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nuitrition Resources
5 Swallowing Problems
Swallowing Warning Signs
HD & Diet~HSA Fact Sheet 7
Weight Gain
Taste changes in HD
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube Resources
Why Certain Symptoms Occur
-Symptom & Treatment Resources
Tardive Dyskinesia
SECTION 5 - Therapies
Finding a Therapist - Behavoir
Speech-Language Therapy
o Easter Seal Therapies & Resources
o Therapy Resources
SECTION 6 - Medications Please Read
Medications-Movement Disorders
~HD Treatments
Adolescents Under 25
Antidepressant Adverse Effects
Anti-psychotic Medications
Anxiety-Antidepressant Medications
EPA-Fish Oil
Haldol/Haloperidol - Clinical Medication Sheet
Haldol~Clinician Description
Haldol & HD
Haldol-HD Patient Experiences
Haldol~ Patient Handout
Mood Stabilizers: Dosing & Target Symptoms
Olanzipine-Risperidone & blood tests
Prozac, Luvox, Paxil, Zoloft & Celexa
Psychiatric ~ Children
SSRI Medications
Weight Gain Medications
Weight Gain Medications
Sertraline ~Zoloft
Cutting Prescriptions
Sites That Help the Medicine Go Down
Vitamin & Mineral Deficiencies
o Drug Info Resources
-Medication/Emergency Forms
SECTION 7 - Surgery
Surgery-Movement Disorders
o Surgery Resources
SECTION 8 - Procedures
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 9 - Alcohol/Drugs
Alcohol-Parent's Guide
Alcohol-Talking To Your Child
Drugs-What To Do?
Drugs-Talking To Your Child
Disciplining-Ages 0-13 & Up
SECTION 10 - Suicide
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 11 - Divorce
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 12 - Disabilities
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
o Disability Resources
Special Needs Resources
Financial Planning
Finding A Special Needs Camp
Special Needs Camp
SECTION 13 - Assisstive Help
Child Assistive Technology
Resources For Adaptive Equipment
SECTION 14 - Emotional
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 15 - Grief
Helping Child Deal With Death
o Grief Addtional Resources
ADD/ADHD Research Articles
ADD & Teens
Conduct Disorders
Understanding AD/HD
What Is AD/HD?
o ADD~AD/HD Resources
SECTION 17 - Support
HD Support Groups
National Youth Association
SECTION 18 - Links
HD Links
Helpful Forms-Info
Related Resources
Tips For Friends
SECTION 19 - Benefits
HD Disability
-No Insurance? Try Siding Scale Savings
-Social Security-Benefits For Children With Disabilities
SECTION 20 Articles
SECTION 21 - Caregiving
Caregiver's Handbook
Ten Tips For Family Caregivers
Useful Tools For Caregivers
Prepare For & Prevent Home Emergencies
Getting Respite Care or Extra Help At Home
"First Shift With A Person With HD"
Symptom Management
Caregiver Self-Assessment
SECTION 22 - My Experiences
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart


Commonly asked questions about HD

1.  What is Huntington's Disease?
Huntington's Disease (HD) also called Huntington's Chorea is an inherited disorder of the central nervous system. 
It causes progressive deterioration with varying symptoms which may include involuntary movements, speech impairment, and intellectual and emotional changes. Symptoms usually appear between the ages of 30 and 45, although they may appear earlier or later.

2.  How does the disease get its name?
The disease is named after Dr. George Huntington, an American physician, who was the first to publish a precise
description of the symptoms and course of the disease in an article written in 1872.

3    Who Is Affected?
HD is hereditary. Each child of a parent who has HD has a 50/50 chance of inheriting the gene and is said to be at risk.
Huntington's Disease affects both genders as well as different races and ethnic groups throughout the world.

4.  How is the disease inherited?
This is a genetic disease.  People with the abnormal gene will always develop the disease, unless they die of other causes
prior to developing signs and symptoms.  People who do not inherit the HD gene will not develop the disease, neither will their children, or the childrens children.  The disease does not skip a generation.

5.   How is it caused?
It is caused by a dominant defective gene which causes certain brain cells to deteriorate.

6.  How many people in United States are affected?
Huntington's Disease, once thought of as rare, is now recognized as one of the more common hereditary diseases. In the past,
families often hid HD as a shameful secret. This fact coupled with medical misdiagnosis of HD, has led to an underestimation of its prevalence.

It is estimated that 35,000 people have the illness in USA .  Another 200,000 are at a 50 percent risk of inheriting the disease
from an affected parent.  On average for every individual with the disease there are 22 close family members indirectly affected. 

7. Is there any test to predict if a person will get the disease?
Research has provided a bright ray of hope for the future. In 1983 scientists discovered a genetic flag known as the HD marker
and after a 10 year search the HD gene was finally located and described in March 1993.

This resulted in a DNA test and associated counselling which will inform the individual, who is at risk, if they are carrying the gene for Huntington's Disease before symptoms appear. This test will also confirm a neurological diagnosis.
Details on the predictive test are available from several HDSA approved Genetic Test Centers.  Contact the HDSA at 1-800-345-4372.  Some testing centers may request a parent's blood sample for confirmation. Pre-test and post-test counseling is part of the procedure.

Decisions can be made about careers, childbearing and other long-term issues. But because there are few therapeutic options that are effective in combating HD, not every individual at-risk for this devastating disease will choose to have the test performed.  

8.  Can Huntington's Disease strike without a family history of it?
Spontaneous mutation of the genes can occur. 

9. What Are the Symptoms?
Early symptoms appear slowly. The symptoms can also differ from person to person, even in the same family.

Sometimes, the symptoms are present for a long time before a diagnosis of Huntington's disease is made. This is especially true when people are not aware that Huntington's disease is in their family.

The early symptoms include:
  • slight, uncontrollable muscular movements
  • stumbling and clumsiness
  • lack of concentration
  • short-term memory lapses
  • depression
  • changes of mood, sometimes including aggressive or antisocial behaviour

Some people who know they are at risk spend time searching for the first signs that they are developing the disease. They may worry about simple things like dropping a cup, forgetting a name or becoming unusually bad-tempered.  Most people do these things occasionally - whether they are at risk from Huntington's disease or not - so they could be worrying unnecessarily.

Anyone who is concerned should have a word with their physician who may refer them to a neurologist for tests. These tests could include a number of simple assessments and possibly a brain scan. The genetic tests mentioned above may also be used to aid diagnosis.

Children as young as two and adults as old as 80 have developed Huntington's Disease. These symptoms usually appear, however, between the ages of 30 and 50 - after a person has married, had children and perhaps passed on the HD gene.

10. How is the family affected?
Members of a HD family are challenged (emotionally, socially and economically) as HD affects everyone in different ways.  People with HD
must learn to cope with the many challenges that the disease brings and the changes in their ability to contribute within society. Many experience isolation, some may be abandoned, but the majority make positive adjustments and enjoy life.

Children live with the prospect of inheriting the disorder and face the adult decision about genetic testing. Their decisions about marriage, having children and career choice may be affected by their own HD risk status.

Great strain is put on relationships if unexpected temper outbursts are directed towards the partner. The time before a diagnosis is made
can be very confusing and frightening because people do not understand what is happening and why. Spouses hold the family together in the face of disability, income loss, relationship and emotional changes - often with little relief.
Family resources can be severely depleted by the illness because many HD individuals require long-term home and/or institutional care. Therefore,
it is important to do as much financial and legal planning for the future as possible.

11. What treatments are there for the disease?
There are no treatments that will halt or reverse the disease process at present.  It is possible to treat some of the effects, such as
depression, and gross involuntary movements, with various drugs.  Improvements in general health, such as adequate nutrition, will bring about improvements in the status of the person, and in their enjoyment of life.  Immense strides are being made in medical research.  Huge sums of money are being put into research. 
12. Is  there a special diet required for sufferers?
There can be rapid weight loss, and it is estimated that HD patients need something in the order of 5000 calories a day to sustain them
  twice that of the average adult intake.  It has been shown that many patients who manage to gain weight also find that their clinical state improves.
HD affects both sexes and all races and
ethnic groups around the world.
Where to Find Help
The Huntington's Disease Society of America has a nationwide network of chapters, affiliates and Centers of Excellence for Family Services that provide support and referrals as well as state of the art regional care for individuals with HD and their families.  Contact HDSA by calling 1-800-345-4372 (HDSA) or on the Internet at  www.hdsa.org
The Huntingtons Disease Society of America (HDSA) is a national voluntary non-profit organization dedicated to finding a cure for Huntingtons Disease while providing support and services for those living with HD and their families. Founded in 1967, HDSA promotes and supports both basic and clinical HD research, aids families throughout the continuum of HD and educates families, the public and healthcare professionals about this devastating disease.
An End to HD?
The outlook for solving the puzzle of Huntington's Disease has never been more promising. In 1993, researchers finally were able to identify the gene that causes HD.  Momentum in HD research continues to increase our understanding about the Huntington's gene and how it functions.  Current research projects or those in development could provide the next major discovery at any time.

The Huntington's Disease Society of America (HDSA) funds both clinical and basic research at leading hospitals and research facilities through the HDSA Coalition for the Cure, the HDSA Grants and Fellowships program and through our HDSA Centers of Excellence for Family Services. With your help, our continued commitment to research funding WILL solve the puzzle of HD.