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Huntington's Disease Youth Organization

Jobs and an HD diagnosis

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

Q. Can being diagnosed with HD affect the kind of job you get in future?

Elli, UK

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A. Hi Elli,

What a good question – I wonder what prompted you to ask?

You mention about jobs in relation to someone who has been diagnosed with HD. So a diagnosis would mean that someone has already started with the symptoms of Huntington’s disease including involuntary (fidgety) movements. Many of our patients in the early stages of HD do continue in their jobs – a whole range of jobs too. In terms of jobs in the future, it would really depend on that the job involved and the extent to which symptoms may interfere with doing the job. For example someone who had already started with HD would not be suited to a job such as a long distance lorry driver.

I know you didn’t ask this Elli, but I just wanted to add that for someone who has a family history of HD or someone who has had a predictive test that shows (s)he has the HD gene fault but not yet started with symptoms, the situation is very different and they would be free to choose any job. The only exception that I’ve been made aware of in the UK is an army career but I know this is something the Huntington’s Disease Association is challenging. Sometimes people confuse having a predictive test (no symptoms of HD) with being diagnosed with HD (symptoms of HD) and so for this reason we discuss very carefully before someone has a predictive test whether they would plan to share such information with future employers.

Elli – from your point of view, I know from your email that you are a teenager. I think it’s fair to say that for teenagers who have a family member with HD, the world really is their oyster in terms of what you want to do.

I hope this helps. If you are still not clear or I have not answered your question, please do write to me again.

Rhona Macleod

Last updated: November 28, 2012 15:33