Living at Risk for HD

Posted on May 17, 2013 in Teens

Being ‘at risk’ basically means that a person has a chance of inheriting the condition from their affected parent. This is because Huntington’s disease is a genetic condition, so anyone who has a parent with Huntington’s disease is at risk of inheriting the condition.

Huntington’s disease is hereditary – that means that it can be passed down, from parent to child, through genes in our DNA. Genes are passed to you from your parents – that’s why you might have blond hair like your dad, or brown eyes like your mother. We have thousands of genes, and they are all sectioned into different segments in our DNA. These segments are known as chromosomes and in total we have 23 pairs of chromosomes. The reason we have ‘pairs’ of chromosomes is because we inherit one from each parent.

Researchers discovered that the reason people develop Huntington’s disease is because of one gene, on chromosome 4, that is longer than it should be. The fact this gene is longer means that it eventually causes symptoms of Huntington’s disease. So, the gene can be described as ‘expanded’. Usually a person with Huntington’s disease has one expanded gene and one normal gene. A child of someone with Huntington’s disease will either inherit the expanded or the normal gene from that parent – and a normal gene from the other parent. That’s why there is a 50/50 chance (50% risk) of inheriting Huntington’s disease. Whether a person inherits the expanded or normal gene is purely down to chance, and that’s why you may hear people compare the risk for Huntington’s disease to the flip of a coin. Unfortunately if someone does inherit the gene that causes Huntington’s disease, then there is a risk of the gene being passed on to his or her future children as well.

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50% Chance of Inheriting HD

Posted on May 17, 2013 in Teens

There are many different types of worries that young people have about the 50/50 risk and one common feeling is that, although they know scientifically the risk is 50%, it simply does not feel that way to them. Many people feel like the odds are stacked in favour of inheriting the expanded gene that causes Huntington’s disease, rather than the normal gene that does not.

It is very common and understandable to feel this way. The worry can tend to feel larger than a 50/50 risk should, and the mind has a way of focusing on the worrying aspect of that 50/50 risk, rather than the more positive outlook that there is also a 50% chance of not having Huntington’s disease.

Some people at-risk actually prefer to think and live as if they are going to get Huntington’s disease at some point in their lives. People see it as a good way to cope – expecting the worst and hoping for the best – and also it can be seen as a good approach to living life because it can sometimes encourage people to do more with their time.

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Siblings

Posted on May 17, 2013 in Teens

One of us must have it.

An extremely common feeling or misunderstanding among brothers and sisters at risk for Huntington’s disease is that one of them must have it. But that’s absolutely not the case: each individual has a separate 50/50 chance of inheriting Huntington’s disease. For example, if there are 10 siblings in a family who all have a 50% risk, it does not mean that 5 of them must have the expanded Huntington’s disease gene – the science does not work like that. Because each individual has their own 50/50 risk, there is absolutely no predicting how many out of those 10 siblings have or haven’t inherit an expanded gene.

Many young people, who know and understand that each individual has their own 50/50 risk, find it doesn’t stop them from thinking that siblings’ risks must be linked.

For example, in a family with a brother and sister at-risk, if the brother decides to be tested and receives a negative result (meaning they won’t get Huntington’s disease) the sister may start to think that she must have inherited it instead.

As mentioned above, this is simply not the case so it’s very important to remember that each person has his or her own separate 50/50 risk.

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Searching for Characteristics of HD

Posted on May 17, 2013 in Teens

Another common worry for young people at-risk is that they share the same characteristics as their family member who has Huntington’s disease. This is down to the fact that the disease is genetic and people feel if, for example, they have the same hair, eye colour or features as their affected family member then they may have inherited the gene for Huntington’s disease from them too.

Fortunately, genetics does not work like this. Basically, each gene is passed down separately. Someone at risk could look, sound and behave exactly like their affected parent in every way – it doesn’t matter: that person’s chance of having inherited the gene that causes Huntington’s disease is still 50/50.

Some young people also live in a family where there may appear to be a pattern to how the disease is inherited. For example, it may be the case that in the last few generations, in one particular family, they may have had only the women in the family inherit the disease, or the eldest siblings etc. This can lead people to believe that the pattern is certain to continue in exactly the same way for their generation of the family.

No family has a ‘pattern’ or ‘script’ for how people inherit Huntington’s disease. It is just coincidence that the family tree has worked out that way. Remember, each individual has a 50/50 risk – family patterns have no influence at all.

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Living Life While at Risk

Posted on May 17, 2013 in Teens

Being at risk, and the worry that comes with it, can also have an impact on people’s personal lives, whether that be educationally, career-wise or relationships. The impact of being at-risk on people’s lives can be very difficult to cope with. Downwitemnoyris But the impact, although difficult, does not have to be a negative one. Rather than letting the fact you are at-risk hold you back or bring you down, it can be used to encourage yourself to achieve what you want to achieve in life, whatever that may be. Sometimes, achieving what you want to achieve can mean making a lot of changes in life, or being brave and determined about what you want to do in life. The point is that being at-risk does not always have to be a ‘dark cloud’ hanging over people – it can be the encouragement to go on in life and achieve the things you want to achieve.

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Support

Posted on May 17, 2013 in Teens

Being at risk, causes a lot of worries and concerns for young people. So it is important that young people at risk are supported by those around them. As a family, the best way to cope with Huntington’s disease is to discuss it freely and be open, so that young people feel comfortable and know that they can talk about any worries they have with the family.

If open dialogue about Huntington’s disease is missing in the family, young people can end up feeling very isolated with their concerns. Often, just being able to talk about their worries is a great relief for them.

As a young person, your family should always be the first place to turn to when you want to discuss how you feel with regards to Huntington’s disease. But if you don’t feel that you can talk to your family about Huntington’s disease or you don’t want to talk to them, then you may find support through YPAHD or other similar organizations. There, you will find many young people going through similar concerns who will be able to share experiences. Talking to others in similar situations can be a great support.

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