Home English Sign in or join HDYO Kids Teens Young adults Parents JHD Friends Professionals News About Us Videos Blog JoHD Registry Books HD Research Events Fundraising Ask a Question Creative Expression Local Support Links Contact Us Terms Privacy Language Sitemap Donate Store
Kids Teens Young adults Parents JHD Friends Professionals

How do you go about being diagnosed?

June 5, 2016

Huntington's Disease Youth Organization

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


How do you go about being diagnosed?

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

Ask a question

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,