Dr. Suzanne O'Sullivan

Impulse control. And then you start getting involuntary movements. They're called choreoform movements, like funny writhing movements. And then ultimately you lose control of your speech and of your swallow. So you have both a psychiatric decline and you have a physical decline. It's an inherited condition. And they discovered the gene for Huntington's in 1994, I think it was.

Impulse control. And then you start getting involuntary movements. They're called choreoform movements, like funny writhing movements. And then ultimately you lose control of your speech and of your swallow. So you have both a psychiatric decline and you have a physical decline. It's an inherited condition. And they discovered the gene for Huntington's in 1994, I think it was.

If your parent has a Huntington's disease gene, then you have a 50-50 chance of getting it. I think this is a fascinating concept because there are people walking around knowing that they have a 50-50 chance of getting this disease and knowing that there is a test that they can get that will tell them whether they have it or they don't have it.

If your parent has a Huntington's disease gene, then you have a 50-50 chance of getting it. I think this is a fascinating concept because there are people walking around knowing that they have a 50-50 chance of getting this disease and knowing that there is a test that they can get that will tell them whether they have it or they don't have it.

If your parent has a Huntington's disease gene, then you have a 50-50 chance of getting it. I think this is a fascinating concept because there are people walking around knowing that they have a 50-50 chance of getting this disease and knowing that there is a test that they can get that will tell them whether they have it or they don't have it.

And of all those people who could have that test, only about 10 or 20 percent of people actually have the test.

And of all those people who could have that test, only about 10 or 20 percent of people actually have the test.

And of all those people who could have that test, only about 10 or 20 percent of people actually have the test.

They have this opportunity to know this enormous part of their health future and they don't take it up. I spoke to a lady called Valentina. Her mother was adopted, so didn't know this was in the family. Valentina was 28 and pregnant when she discovered her mom had Huntington's disease. So the minute she discovered that, she knew she had a 50-50 chance of getting it.

They have this opportunity to know this enormous part of their health future and they don't take it up. I spoke to a lady called Valentina. Her mother was adopted, so didn't know this was in the family. Valentina was 28 and pregnant when she discovered her mom had Huntington's disease. So the minute she discovered that, she knew she had a 50-50 chance of getting it.

They have this opportunity to know this enormous part of their health future and they don't take it up. I spoke to a lady called Valentina. Her mother was adopted, so didn't know this was in the family. Valentina was 28 and pregnant when she discovered her mom had Huntington's disease. So the minute she discovered that, she knew she had a 50-50 chance of getting it.

And she knew that her unborn child had a 25% chance of getting it. Obviously, it was devastating. She had siblings who had children. The family were very anxious and their first impulse was to think they would be tested. They met genetic counselors and then it was pointed out to them that the minute you test, your whole life changes if it's positive and it's a devastating diagnosis.

And she knew that her unborn child had a 25% chance of getting it. Obviously, it was devastating. She had siblings who had children. The family were very anxious and their first impulse was to think they would be tested. They met genetic counselors and then it was pointed out to them that the minute you test, your whole life changes if it's positive and it's a devastating diagnosis.

And she knew that her unborn child had a 25% chance of getting it. Obviously, it was devastating. She had siblings who had children. The family were very anxious and their first impulse was to think they would be tested. They met genetic counselors and then it was pointed out to them that the minute you test, your whole life changes if it's positive and it's a devastating diagnosis.

So they put it off. Now, what happened to Valentin in the following years is although she hadn't tested, she became absolutely convinced she had Huntington's disease. She could just tell she had it. Organization problems and anxiety and anger outbursts are common at the beginning of Huntington's disease.

So they put it off. Now, what happened to Valentin in the following years is although she hadn't tested, she became absolutely convinced she had Huntington's disease. She could just tell she had it. Organization problems and anxiety and anger outbursts are common at the beginning of Huntington's disease.

So they put it off. Now, what happened to Valentin in the following years is although she hadn't tested, she became absolutely convinced she had Huntington's disease. She could just tell she had it. Organization problems and anxiety and anger outbursts are common at the beginning of Huntington's disease.

She began having arguments with her husband or if she went to the airport, she couldn't organize her documents. If she was walking, she'd walk into walls. So she was aware that her symptoms were accruing. But she was frightened to have the test, to have it confirmed. Because the minute it was confirmed for her, her children were at a much higher risk.

She began having arguments with her husband or if she went to the airport, she couldn't organize her documents. If she was walking, she'd walk into walls. So she was aware that her symptoms were accruing. But she was frightened to have the test, to have it confirmed. Because the minute it was confirmed for her, her children were at a much higher risk.

She began having arguments with her husband or if she went to the airport, she couldn't organize her documents. If she was walking, she'd walk into walls. So she was aware that her symptoms were accruing. But she was frightened to have the test, to have it confirmed. Because the minute it was confirmed for her, her children were at a much higher risk.