Below is the link to yesterday's Patient Power broadcast on JHD. I just
listened to the interview which lasts 49:47 so pour a cup of coffee to
listen! Check back on Patient Power after a few days for the written
transcript of this broadcast.
Dr. Sandra Kostyk and the host, Andrew Schorr, discuss the importance of
getting enrolled for clinical trials for HD, the House TV program's Doctor
13's character. In a brief interview with Dr. Martha Nance she covered how
10% of the people diagnosed with HD have JHD. Age of onset is "all over
the map" although its more common in teenage years however she's seen in it
children as young as two. She discusses the difference in symptoms between
JHD and adult-onset HD. Parents usually take a child with possible symptoms
to a Pediatric Neurologist's who don't have much experience with JHD. The
HDSA Centers of Excellence will work closely with those pediatric
Some of the questions asked on the JHD segment were:
How do you predict how long a child might live with JHD - how should someone
view the future?
If there's a family that has one child diagnosed with JHD should the parents
check the other children?
Mother in Mexico has had 4 out of 7 children diagnosed with HD. What is the
risk of her other children developing HD?
Has there ever been a child diagnosed with JHD live to adulthood?
Since there is no cure or treatment, what is available to help with some of
Supplements - some evidence is providing a lot of hope with supplements
If HD is in your family should you have a genetic test prior to getting
marriage? [Andrew teased maybe a producer with the TV program House
asked this question for a future plot]
What planning should family members consider when they have a JHD child?
How can the entire family get help when a child is diagnosed with JHD?
How do you explain the disease to the child diagnosed with JHD?
How often should a JHD patient be monitored or followed up by differenct
members of a JHD team?
Any specific medications specifically for helping JHD? The caller had heard
Haldol was the best for chorea.
To summarize Dr. Kostyk, where are we today and were do you hope to be?
All in all a good interview! I, for one, so much APPRECIATE Andrew Schorr
and Patient Power for producing these awareness programs on HD. Please
encourage your family, friends and co-workers to listen to them too as well
as any other professionals helping YOU live with HD!
Don't forget to listen to today and tomorrow's broadcasts either!
SERIES ON HUNTINGTON'S DISEASE
June 2nd - 4th 2008
HOW TO PARTICIPATE:
Listen live at www.patientpower.info at 12 pm to 1 pm Central Time
Email questions to questions@...
View all 3 segments: http://www.patientpower.info/specialeditionhd.asp
Monday, June 2nd - "Juvenile Huntington's Disease"
Juvenile Huntington's disease is rare, but certainly not unheard of. It can
affect adolescents anywhere between infancy and young adulthood. Join this
webcast to hear why symptoms of juvenile HD vary from that of adults. Hear
from two leading experts, Dr. Martha Nance and Dr. Sandra Kostyk. Both
experts will discuss the latest in the HD numbers affecting children,
genetic testing, the importance of a team approach for this condition.
Tuesday, June 3rd - "Huntington's Disease in the Prime of Life":
This program will address issues surrounding Huntington's disease in the
prime of life. Why does this disease vary in the rate of progression? Are
there lifestyle factors that play a role? Join medical expert, Dr. Karen
Anderson, who will answer your questions about coping with HD in the prime
of life, concerns over child safety around HD parents, HD patients depending
on others, and you'll also hear Dr. Anderson separate myth vs. facts.
Wednesday, June 4th - "Huntington's Disease Research and Progress":
Researchers are making progress with Huntington's disease, as ongoing
research has been underway. Hear from two leading HD experts, Dr. Jody
Corey-Bloom and Dr. Joseph Jankovic, as they discuss the Memantine clinical
trial, where we are headed, and current and future clinical trials. This
discussion is designed to answer your questions about research and progress.
Don't miss the chance to ask leading experts the questions that matter the