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Huntington's Disease Youth Organization

How do you go about being diagnosed?

HDYO has more information about HD available for young people, parents and professionals on our site:

Q. Hi , I’m doing a report on huntington disease & I would like to know how does a person with huntington go about being diagnosed . how did it happened.

Tierney, Teen, USA

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A. Hi Tierney,

Thank you for reaching out to HDYO with your question.  A person who is interested in getting testing for Huntington’s Disease can contact a local HD Specialty Center or a local neurologist who has experience with HD.  The process usually includes a few appointments.  Often, it starts with a call to the center director or social worker.  This call gets the process rolling and helps discuss that clinic’s specific process.  The first appointment will often include meeting with a genetic counselor, a social worker, a neurologist and a psychiatrist - this sometimes depends on the clinic.  There is then often a bit of a waiting period prior to getting their blood drawn.  The last appointment is the results appointment.  It is recommended that an individual brings a support person to that appointment to help process the information.

I hope this helps.  Please don’t hesitate to reach out with further questions.

Take care,


Last updated: June 05, 2016 08:10