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Old 26-09-15, 02:17 PM   #3
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Allan's Avatar
Join Date: Sep 2012
Location: Hastings, East Sussex, UK
Posts: 1,152
Default Re: What do you think? New member need advice

Hi there

Apologies for the "essay". I’m sure you’ll have several responses by the end of the weekend – especially if “choco” relates to chocolate.

First port of call for you:

Juvenile HD Care Adviser, Helen Santini, Tel: 01279 507656 email:

Specialist Youth Worker, Adam Cho, Tel: 0151 7053460 Mobile: 07711004146 email:

If you have read anything related to JHD you will have seen that educational performance\attitude and certain behavioural symptoms seem to be more prevalent than in the “adult version”. You list a number of “items” often related to hd but not necessarily specific to the disease, eg anxiety, apathy.

Are you pleased to be at Uni? Are your studies ok? More so, how’s your social life? Do you have good friends that you could talk to?

The reason for my questions is that after my son, 25 at the time, was positively diagnosed in 2012 I had a chat with the Genetics doctor, had my blood taken and Genetic test results given within a couple of weeks - clear. My daughter, 2 years out of Uni then elected to go for Counselling prior to Genetic testing. She had several sessions where she was able to gain a whole load of relevant info. So, when decision day arrived, she was fully prepared for what lay ahead – an hd-free life. My advice is to learn what you can from the professionals and Discuss with your friends.

Whatever you read or hear about the effects of JHD and HD will vary greatly. These are some extracts from JHD papers:
  1. Patients with symptoms but not unequivocal signs, or soft motor signs only, are sometimes said to be in a “prodromal” stage of HD. By definition, prodromal HD cannot be diagnosed beyond reasonable doubt, as per the standard for manifest HD; rather, it must necessarily be judged and treated on the balance of clinical probability. Symptoms of prodromal HD are increasingly recognized as requiring diagnosis, discussion, and management.

  2. Clinically, early Huntington disease patients had more rigidity, bradykinesia, dystonia, dysarthria, seizures and ataxia when compared to adult onset Huntington disease patients, but chorea was more frequent in the adult onset group.

  3. Muscle tone was diffusely increased. Deep tendon reflexes were increased. His gait was wide-based, rigid, slow, and unsteady. Examination of extraocular movements revealed slow saccades and nystagmus.

  4. A 21 year old woman is the second daughter of a non-consanguineous couple with five members affected for Huntington disease, with paternal inheritance. Her symptoms began with visual hallucination at 13 years, followed by aggressiveness. Two years later, she presented chorea. By age 16 years, she had developed urinary incontinence. By age 18 years, she began gait disturbances and anarthria, followed by progressive intellectual decline with psychiatric disturbance and dysphagia. Generalized seizures began at 20 years of age. On physical examination, she had generalized rigidity, increased deep tendon reflexes, bradykinesia, choreic movements, anarthria, and dementia

  5. Patients with juvenile Huntington disease had more rigidity, bradykinesia, dystonia, dysarthria, seizures and ataxia when compared to patients with adult onset Huntington disease.

  6. Huntington’s Disease Society of America. Typical initial symptoms of juvenile HD:
  • Positive family history of HD, usually in the father
  • Stiffness of the legs
  • Clumsiness of arms and legs
  • Decline in cognitive function
  • Changes in behaviour
  • Seizures
  • Changes in oral motor function
  • Chorea in an adolescent
  • Behavioural disturbances

So, you see that it is a very complex issue\situation and the best way to approach your concerns is by contacting the people above – hopefully, to allay your fears.

Best wishes for Uni and, as for sexual attractions, well, it'll happen when it happens.
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