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JHD Patient Power broadcast Monday - Today is Adult Onset, Tomorrow Research

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  • Jean E. Miller
    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
    Message 1 of 1 , Jun 3, 2008
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      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
      the symptoms?

      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!


      June 2nd - 4th 2008

      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
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