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Huntington's Disease Youth Organization

Six questions about testing, symptoms and treatment

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

www.hdyo.org

Q. Hello I have some questions regarding the diseases, because my mom has it.

  1. Why am I not yet allowed to get tested for this disease?

  2. How much is the medicine for this illness?

  3. Since when does this disease exist?

  4. How does the medication delay the onset of the disease?

  5. Can the diagnose also be wrong?

  6. Which symptoms indicate the disease?

Arvid, Teen, Germany

Ask a question

A. Hi Arvid Thank you for sending your questions to us, please see some answers below!

Q1. A person must be 18 to get tested, this is to make sure they are very aware of their decision. This is a very serious decision that someone at risk must make (do I want to know or not?) so they must be certain they are ready and able to handle the testing process plus either result. That does not mean you cannot speak with a genetic counsellor, even now at 13, you can have an appointment to speak with a genetic counsellor about your risk - just to talk.

Q2. Medicine for HD varies in cost, but most are available through the national health service of your country so are not expensive for families. In some countries there is no government support and it becomes expensive to buy the medicine.

Q3. HD has been around for a long time, it is not a new disease - we just didn’t know what it was hundreds of years ago.

Q4. Medicine for HD currently does not delay the condition, but they can help symptoms such as movements, behavioural, depression etc. We hope some treatments that delay HD will be available soon - research is going well.

Q5. I am not a neurologist but yes, people can be wrongly diagnosed with HD. I think it is less common these days, but it used to be very common to here people being misdiagnosed.

Q6. HD has three main symptoms: movements, cognitive (thinking) and behavioural. So a person may keep moving, can struggle with thinking or multi-tasking, and may have difficult behaviour changes in their personality.

I hope this helps, please contact us again if you have more questions or concerns. We are here to help.

Matt