Juvenile-HD

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INDEX Page
Tools For Viewing
10 The Most Commonly Asked Questions
Clinical Trials & Research
Huntington's Disease~WeMove Info
Advocacy/Donations/Press Info
Clinical Definition & Search
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
First Shift-Certified Nursing Assistants
Activities of Daily Living-HD
Unified HD Rating Scale (UHDRS) Motor Section
Westphal Variant
SECTION 1 - AT RISK
Age & Probability Chart
At Risk For HD-What Next?
At-Risk Checklist
Best Interest of Child?
Crystal Ball?
Food For Thought
Parent Hasn't Tested?
Q&A On Risk of Inheriting JHD
Testing Children
SECTION 2 - GENETIC TESTING
Genetic Disorders & Birth Defects
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
SECTION 3 - JHD
Coping With The Early Years
Age of HD Appearance
Age of Onset-Historical
Family-HD Underestimated
Children of Parents With HD
Child~Parent Ill
Clinical Description JHD
HD - What Kids Are Saying
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
JHD Resources
SECTION 4 - SYMPTOM RECOGNITION
Parent Resources
8 Fears of A Chronic Illness
Anxiety/Apathy/Irritability~HD
Anxiety, Fears & Phobias
Apathy-Physician's Guide
Ataxia
Attention-Perceptual/Unawareness Physician's Guide
Bed/Pressure Sores
Bed/Pressure Ulcer Guideline
Behavior Management
Bi-Polar Disorders
Botulinum toxin therapy
Bradykinesia
Caring Tips
Child Abuse-Reconizing Signs
Chorea-Physician's Guide
Chorea
Cognitive/Decision Making/Impulsivity
Cognitive-Short Tips
Contractures~Joints Locking
Dehydration-Physician's Guide
Dehydration
Delirium
Denial of HD
Depression~Physician's Guide
Depression-Understanding It
Depression-How To Help
Depression - Treatment Resistant Patient
Depression-Other Resources
-Read If Your Child Is On Antidepressant
Disgust - Impaired Recognition in HD
Dissociative disorders
Driving - Physician's Guide
Dyslexia
Dyslexia Resources
Dystonia
Dystonia/Rigidity & Spasticity Physician's Guide
Dystonia-Predominant Adult-Onset HD
Epileptic Seizures and Epilepsy
Epilepsy-Seizures~PG
-Seizures ~Special Populations
Falling~Safety
Falling - Subdural Hematoma Risk
Fevers - Unexplained
Fevers, sweating & menstural cycles in HD
GERD (Stomach)
HD Principle Treatments
Hallucinations/Psychosis~PGHD
Hand muscle reflexes in HD
Hypothalamus - A Personal Theory
Insomia ~Physician's Guide
Irritability~Temper Outburst Physician's Guide
Learning Disability
Mania/OCD~Physician's Guide
Mood Disorder Rate In HD
Myoclonus (Movements)
Nails-What To Look For
Night Terrors
Obsessive Compulsive OCD
Panic Disorder
Personality disorders
Pneumonia
Pneumonia-Advanced Stages
Pneumonia - Aspirated (Inhaled)
Prosody - Social Impairment
Sexuality~Physician's Guide
Skins Sensitivity
Sleep Disorders
Smoking-Physician's Guide
Spasticity
Stress
Tremors
Why Certain Symptoms Occur
Symptom & Treatment Resources
SECTION 5 - COMMUNICATION
Communication Resources
Communication Problems
Communication Strategies For HD~Jeff Searle
SECTION 6 - EATING/SWALLOWING/NUITRITION
Hints For Weight Loss in HD
HD & Diet~HSA Fact Sheet 7
Nutrients: Some Possible Deficiency Symptoms
Nutrition and HD~Anna Gaba (Recipes)
Nutrition Information In HD~Naomi Lundeen
Speech & Swallowing~Lynn Rhodes
Swallowing & Nutrition Physician's Guide To HD
Swallowing & Nuitrition Resources
Swallowing Warning Signs
5 Swallowing Problems
Taste changes in HD
Weight Gain
Resources-Drinks/Shakes
-Feeding Tubes~Advanced Stages of HD
-Feeding Tube~Jean Miller
-Feeding Tubes: One More Word ~Jean Miller
-Feeding Tubes & Baby Foods
-Feeding Tube~Dental Care
-Feeding Tube Instructions~Jean Miller
-Feeding Tube Resources
SECTION 7 - THERAPIES
Finding a Therapist - Behavoir
What Is A Physiotherapist?
Physical Therapy In HD
Speech-Language Therapy
Therapy Descriptions
Therapy Resources- Easter Seal
Therapy Resources
SECTION 8 - MEDICATIONS
HD Treatments
Medications-Movement Disorders
Medication/Emergency Info Forms
Cutting Prescriptions
Drugs-Look 'Em Up
-Adolescents Under 25
-Antidepressant Adverse Effects
-Anti-psychotic
-Anxiety-Antidepressant
A-Z Mental Health Drugs
-Creatine
-EPA~Fish Oil
-Haldol/Haloperidol - Clinical Sheet
-Haldol~Clinician Description
-Haldol & HD
-Haldol/HD Patient Experiences
-Haldol~ Patient Handout
-Mood Stabilizers: ASK 3 Questions
-Neuroleptic Malignant Synd WARNING
-Olanzipine-Risperidone/blood tests
-Celexa/Luvox/Paxil/Prozac/Zoloft
-Psychiatric Drugs & Children
Sertraline ~Zoloft
-Spasticity Meds/Treatments
-SSRI Medications
-Tardive Dyskinesia WARNING
-Weight Gain Medications
-Sites/Help the Medicine Go Down
-Vitamin & Mineral Deficiencies
SECTION 9 - SURGERIES
Surgery-Movement Disorders
o Surgery Resources
SECTION 10 - PROCEDURES
Clinic Visits-How To Prepare
CT Scans, MRI's etc.
Swallowing Tests
Tests Commonly Used
o Procedures Resources
SECTION 11- 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 12- SUICIDE
Straight Talk On Suicide
Teen Suicide-You Need To Know
o Suicide Resources
SECTION 13 - DIVORCE
Divorce & Child Stress
Tips For Divorcing Parents
SECTION 14 - DISABILITY ISSUES
Guides To Disability Issues
Caring-Child & Medical Technology
Caring for a Seriously Ill Child
Child Long Term Illness
Disability-Special Education Plan
IFSP Early Intervention Process
Disability Resources
Financial Planning
Wishes Can Come True-Children's Wish Foundations
Special Needs Resources
Special Needs Camp - About
Special Needs Camp - Finding One
SECTION 15 - ASSISTIVE TECHNOLOGY
Child Assistive Technology
Adaptive Equipment Resources
Products
SECTION 16 - EMOTIONAL ISSUES
Signs of Unhealthy Self-Esteem
Emotional Behavior Links
o Emotional Support Resources
SECTION 17 - GRIEF
Helping Child Deal With Death
o Grief Addtional Resources
SECTION 18 - ADD/ADHD
ADD & Teens
Conduct Disorders
FAQS & Related Info
Understanding AD/HD
What Is AD/HD?
Research Articles
Resources
SECTION 19 - HD SUPPORT GROUPS
HD Support Groups
National Youth Association
SECTION 20 - HD LINKS
HD Links
Related Resources
Tips For Friends
SECTION 21 - BENEFITS/INSURNACE
HD Disability
Benefits Check UP - See What You Can Get
Medical Insurance Bureau's Facts On You!
Medicare-Medicaid
Medicare Rights-Home Health & Hospice
Medicare Rights Center Resources
No Insurance? Try This!
Prescription Drug Cards Part I
Prescription Drug Cards Part II
Social Security-Children With Disabilities
SECTION 22 - ARTICLES/JHD
JHD and ADD
SECTION 23 - CAREGIVING
Articles-Resources
Caregiver Self-Assessment
Caregiver's Handbook
"First Shift With A Person With HD"
Getting Respite Care/Help At Home
Helpful Forms-Info
Home Emergency Preparations
Symptom Management
Ten Tips
Useful Tools
SECTION 24 - BIO
Our Personal Experience
Coping At The End
Kelly E. Miller
Song & Verse
Letter From My Heart
GUESTBOOK
o Genetic Testing Resources

INDEX Page

General

HDSA HD Genetic Testing Clinics listing of all facilities approved by
HDSA for genetic testing of Huntington's Disease

CAG Counts and Trials -Huntington's Disease- ... Know Thyself? HDL

"Clairvoyance and Caution: Repercussions from the Human Genome Project,"
Wexler, Nancy Sabin,,
  in Kevles, Daniel J., and Leroy Hood, The Code of Codes:
Scientific and Social Issues in the Human Genome Project (Cambridge: Harvard
University Press, 1992).

Genetics - Gene Therapy and Your Child (General info)
What Are Genes; Types of Gene Therapy, Effects, etc.
http://kidshealth.org/parent/system/medical/gene_therapy.html

Genetic Information and the Family by Bartha Maria Knoppers January 18, 2002
Must genetic knowledge be passed on to blood relatives? The patient may be the
best judge. There is an ethical duty to warn relatives.  As a last resort, health
professionals also have a duty to warn.
 
Wexler, Nancy Sabin, in Seymour Kessler, ed., Genetic Counseling
Psychological Dimensions (New York: Academic Press, 1979).
 
Genetic Testing Packet
http://www.hdsa.org/edu/edu.pl?orderform#401
$1.00 Order this document online from this link to HDSA's website or call 1-800-345-4372
and ask for Anita Mark-Paul Extension 16. Includes the following:
1) Genetic Testing for Huntington's Disease - What's New?
     Dr. Randi Jones, The Marker, Vol. 7, No. 1, 1994. 2 pages.
2) Testing For The Huntington's Disease Gene HDSA,
     6 pages. List of HD testing centers.
3) Experiences of Predictive Testing for HD. HDSA, collected from The Marker,
    6 pages. Perspectives on predictive testing from people who have taken
    the test -- or decided against it.  
 
 
Nursing and Health/MedscapeWire: Good news from genetic screening
tests can bring more to its recipients than relief: it also can bring doubts
about the future and, in some cases

HDSA Testing Guidelines  - Guidelines for Genetic Testing for Huntington's
Disease by the Huntington's Disease Society of America, Inc. The intent is
to assist health care professionals in administering the genetic test for
Huntington's disease and to protect the well-being of those who choose
to be tested.

Huntington's Disease CAG Repeat Sizing -Huntington's Disease CAG
Repeat Sizing The Huntington's Disease (HD) gene was mapped to
chromosome 4p16.3 in 1983 but eluded identification until...

Huntington's Disease ... CAG v Onset The scatter plot is from A Physician's Guide to the Management

 
Predictive Test Guidelines - Guidelines for the Molecular Genetics Predictive
Test in Huntington's Disease. Recommendations concerning the use of a
predictive test for the detection of Huntington's disease (HD) were drawn up
by a committee consisting of representatives of the International Huntington
Association (IHA) and the World Federation of Neurology (WFN) Research
Group on Huntington's Chorea.
 
Genetics, Ethics And Human Values: Human Genome Mapping, Genetic Screening
And Gene Therapy by Nancy S. Wexler.  Ethical, Legal and Social Issues
 
Many attention and executive tasks adequately assess the progression
of the disease at an early stage. For other functions, the overlapping of
retest effects and disease progression may confuse the results.  High
interindividual and intraindividual variability seem to be hallmarks of the
disease.
 
Sporadic Cases of Possible Genetic Diseases: To Test or N...
Arch Neurol. 57;309-310, March 2000, Sporadic Cases of Possible Genetic Diseases:
To Test or Not to Test, Thomas D. Bird, MD
 
The Tiresias complex: Huntington's disease as a paradigm of testing for
late-onset disorders, by Nancy S. Wexler.
 
 
 
EEOC: Enforcement Guidance (7/27/00): Disability Related Inquiries and
Medical Examinations of Employees Under The Americans With Disabilities Act
http://www.eeoc.gov/docs/guidance-inquiries.html

EEOC: Questions & Answers: Disability Related Inquiries and Medical
Examinations of Employees Under The Americans With Disabilities Act
http://www.eeoc.gov/docs/qanda-inquiries.html
 
Genetic Discrimination in the Workplace
Paul Steven Miller, Commissioner U.S. Equal Employment Opportunity Commission
http://www.geneticalliance.org/geneticissues/eeoc.html
 
Department of Labor laws;  Ethical, Legal & Social Implications; SHRM Startegy
Suggestions: Genetic Info in the Workplace; SHRM Guidelines for Genetic Info in the Workplace;
 
Legal Issues Relating to Discrimination and Privacy
 
In The Workplace Fact Sheet
American Civil Liberties Union
 
Two articles:" if an applicant's attending physician's statement indicates a genetic
test has been run on the person, insurance companies do want to see those test
results. Insurers need to have access to all information applicants have, in order
to avoid anti-selection"..."Privacy is a key issue in this discussion, no question
about it. But fairness to all parties is equally important. The playing field must be
kept level for individuals and employers and insurers."
 
Jennifer Jones Simon Foundation/Hereditary Disease Foundation sponsored
Workshop on the "Scientific, Medical, Social, Legal Implications of Cancer Gene
Discovery and Testing" held October 29-30, 1995, in Los Angeles discussed the
tremendous potential for benefit to society through understanding genetic
contributions to the cause of cancer.
 
The ELSI deals with issues of discrimination, privacy, and the psychological
effects surrounding genetics and genetic testing. They will be able to give
you information on insurance issues surrounding genetic testing.
 
MORE
 
Also see the below Genetic Testing related documents on the HD FAQS website: