young-people
Being at Risk of HD

Each child of an affected parent has a 50% chance of inheriting the faulty gene for HD. This means, that no matter how many brothers or sisters you may have, each sibling has the same ‘risk’ of inheriting the faulty HD gene- 50%. This is why children of affected parents are described as being “at risk” Unlike some other diseases or disorders, HD is not biased by the following characteristics:

  • Whether you are a male or female
  • If you belong to a cultural or religious group
  • Your birth order ( whether you are the first, second, third, or fourth child)
  • If your mother or father has the gene
  • your siblings already have the gene

Deciding to Know

Predictive testing (hyperlink) became available in 1993 after the discovery of the HD gene. This test can identify whether or not you have the mutated HD gene. This test is available to persons over the age of 18years and is by no means compulsory. Having the gene test is a personal decision and in fact, deciding whether or not to undergo predictive testing may be one of the most challenging decisions that young people have to make.

Some people decide to undergo predictive testing so they can plan their life or because not knowing becomes too stressful, while others are more comfortable with not knowing and are prepared to take what life brings. Whatever your decision is, it is generally a good idea to talk it through with professionals or others who have engaged this process for themselves. .When undertaking the gene testing, there may be more to consider than what you initially anticipated. Therefore it may be worthwhile contacting Huntington’s Victoria for more information and assistance to link in with the Predictive Testing Program Coordinator

Looking Ahead

Living with the risk of HD can be highly stressful and be likened to an emotional roller. It is important to acknowledge that everyone copes with this situation differently. Some people are able to keep going with their lives and continue to live life as ‘normal’ whilst others find this a little more challenging.

As part of living with being ‘at risk’, you may wish to consider some long term choices in relation to travel, education, career choices, marriage, and having children in case you are gene positive. Considering and thinking about these things ahead will give you the opportunity to achieve what you want to accomplish in life. Although these are very personal decisions, and decisions you do not need to rush into making, the following may be able to help:

Should I start a career?

Studying towards a career or engaging in paid work is fulfilling, rewarding and can help provide direction and purpose. However, not unlike other young people, making career choices can be difficult and confusing at times. Having the ‘at risk’ status in the back of your mind is normal, but it is important to recognise your identity- who you are and what is important to you when deciding to study at university or to embark on a career. It is also important to recognise that deciding upon a career path at a young age is also very difficult and it is not uncommon to make several changes along the way. Despite your ‘at risk’ status it is still ok to change your mind about your career direction.

Can I have a meaningful relationship?

Being ‘at risk’ should not preclude you from forming meaningful relationships and enjoying what relationship have to offer. Having an open and honest relationship with your partner can help ease some of the burden of concerns that you have. Ensuring that both you and your partner have the most up to date information will enable you, as a couple to make the best informed decisions about your future together. This can include marriage, children, investments, etc. Specialist services like Predictive Testing, IVF clinics etc may be instrumental in your decision-making capabilities as a couple. Yet again, these are personal decisions that only you can make in conjunction with your partner.

Can I pass the HD gene on?

If you are gene positive, then should you decide to have children naturally (not through IVF) then each of your children will also have a 50% chance of inheriting the faulty HD gene. However if you are gene negative (don’t have the faulty HD gene) then none of your children will be at risk of developing HD as it cannot skip a generation. If you don’t inherit the gene then you will not develop the disease and therefore you cannot pass it on to future generations. Should you wish to know your gene status then this can be done through the Predictive Testing Program. Undergoing this type of testing is a very personal decision that only you can make.

Should I have children?

This is probably one of the most challenging decisions that a couple will make and there is no right or wrong answer to this question. Some people decide against having children so not to risk passing the faulty gene on to future generations, whilst others choose to start a family based on positive personal family experiences, even when a parent has HD. However, with advances in medical technology there is now the opportunity for people to start a family whilst ensuring that their baby will be gene negative, even if they don’t know their own gene status.

IVF Pre-Implantation Genetic Diagnosis (IVF PGD) is the earliest form of prenatal test carried out with the use of in vitro fertilisation (IVF). This technique screens embryos for genetic diseases such as the faulty HD gene and then transfers only ‘normal’ embryos to the uterus, ensuring that the child will be gene negative. This provides individuals with the opportunity to fulfil their desires of being a parent, however eliminates the risks of passing on the HD gene to future generations.

Where can I find more information?