Huntington's Disease Association

How can we support you as you navigate Huntington's disease?

We offer emotional support and the space to talk without fear of judgment. We share practical advice so that you can understand and better deal with symptoms and changes in behaviour in family members. We try to be as flexible as possible and meet the needs of everyone who uses the service.

We want to remove the stigma associated with Huntington's and help families talk about it together. We also want to help you build social networks within the community. The Huntington's community is made up of friendly, caring, knowledgeable, experienced, honest and open people and we are all here for you. Remember, you are not alone.

Ways that we can support you

One-to-one support from our Youth Workers

Huntington's Disease Youth Engagement Service

Events for young adults

Advice speaking with employers or university

HD Youth Voice opportunities

Advice around topics that you may be thinking about

Living at risk

Huntington's disease risk

Every child conceived naturally to a parent who carries the Huntington’s gene has a 50% chance of inheriting it. Although it is a rare disease, other people live with this risk and you are not alone.

Living with the knowledge that you are at risk can be very worrying. You may feel that you would prefer to know for certain whether or not you have the faulty copy of the gene. Alternatively, you may feel that you would prefer not to know, until or unless you get symptoms.

Choosing to test

Deciding whether to have the genetic test is something to think very carefully about as it could impact the rest of your life. It may also affect others in your family, but it is your choice. Be careful not to rush into making a decision about testing. Once you have been given your test results, you can’t change your mind about whether or not you want to know.

Going to a genetics clinic does not mean that you are obliged to take the test but it does give you the chance to talk over all the implications and any other concerns you may have. Each clinic follows an agreed counselling ‘protocol’; usually at least three sessions where you can talk over the implications of testing and any questions you may have, before you decide.

Living well

Modern day life is busy. Most of us have to juggle many things – long work hours, relationships, family commitments, social lives.

Most people will have heard of the following mantras:

eat healthily
get enough exercise
use your brain
sleep well
take time for relaxation

Healthy living can benefit everyone, leading to improved mental health, a greater sense of control over life and a better ability to cope when the going gets tough. It’s very important to take time out for relaxation and ‘me time’. These principles can be especially relevant for people who are at risk of or living with Huntington’s disease.

Exercise has been shown to have many benefits for people of all ages and every level of fitness and health. Some of these benefits can include improved mood, concentration, cardiovascular conditioning and improved strength, balance and coordination.

If you are at risk for Huntington’s, or in the early stages of the disease, these benefits can significantly improve your quality of life.
Taking part in exercise is one of the few ways that individuals at risk of Huntington’s can have some control over the potential effects of the disease process.

Genetic testing

Deciding to have the test for Huntington’s

Only you can make the decision about whether you want to be tested, and you usually need to be over 18 before the test will be performed. Parents, partners and other family members may pressure you one way or the other, but it remains your decision.

If you do decide to get tested, in addition to any emotional impact on you and your family, you also need to think about things like the effect of a positive result on other aspects of life such as life insurance and job opportunities. In certain occupations, such as the armed forces, it may be an obstacle to recruitment.

If you have only recently discovered that you are at risk, be careful not to rush into making a decision about testing. Once you have been given your test results, you can’t change your mind about whether or not you wanted to know.

About the test

Testing is only available at Regional Genetics Clinics, which are located throughout England and Wales. You can ask your GP to arrange an appointment for you.
Going to a genetics clinic does not mean that you are obliged to take the test but it does give you the chance to talk over all the implications and any other concerns you may have. Each clinic follows an agreed counselling ‘protocol’; usually at least three sessions where you can talk over the implications of testing and any questions you may have, before you decide.
You can withdraw from the testing process at any time.
If you decide to have the test done you may have two separate blood samples taken (to double check the results). Your affected parent’s blood may also be tested to check the original diagnosis of Huntington’s disease. The DNA which is extracted from the blood is then analysed in a specialised laboratory.
The clinic will want to allow time to ensure that a result is ready for you and you may need to wait around four to six weeks from your third counselling session for a result. Some people find waiting for the results very stressful. If you feel there is a particularly long delay, do ask the genetics clinic for the reason.
According to national and international guidelines, follow-up counselling – after you have been given the test result – should be available. You can find out about this from your clinic.

Test results

Every person has two CAG repeats, one from the mother and one from the father. If one of the CAG repeats is above 40, this is classed as a positive result (full penetrance) and the person will go on to develop Huntington's disease. If both CAG repeats are under 26 then this is a negative result.

CAG repeats

Find out more in our genetic testing guide

Taking part in research

Once you turn 18, you can take part in research if you wish. There are many types of trials that you can get involved in but a great place to start is with Enroll-HD.

Enroll-HD

Enroll-HD is an international study that is recruiting all year round.

The aim of the study is to accelerate the development of therapies for Huntington's by collecting more uniform clinical data and biological samples to better understand the natural history of Huntington's disease.

Find out more

Watch the video below to see what it's like to visit the Enroll-HD clinic for a yearly appointment.

Taking part in research, even if you are negative, don't know your status or are a relative of someone is really useful to help researchers discover patterns.

Becky shares why she takes part in Enroll-HD

Recruiting studies

Research studies come in many forms. Some may require you to speak to them about your experience, others may require meetings with medical professionals or taking part in focus groups. You can find out more about current and past studies or sign up to our mailing list in our research page.

Current studies

Below is a short video from HDYO about taking part in research.

Understanding research

Understanding what is happening in the world of research is complicated enough. In addition, many of the words used can make things even harder to understand. Huntington's Disease Youth Organization has created a handy glossary of research terms to help you understand research a little better.

HDYO research terminologies

Family planning

If you have Huntington’s or know you are at risk of it and would like to have children now or in future, you may wonder what your options are. In particular, because Huntington’s is a genetic disease, you are likely to be concerned about the possibility of passing on the faulty gene to your children.

Download starting a family guide

Pre-implantation genetic testing - Seek pre-implantation genetic testing (PGT-M) which is a type of IVF.

Prenatal diagnosis - After conceiving naturally, you can undergo a test to see if the embryo is affected.

Egg, sperm or embryo donations - A way to still experience pregnancy and childbirth and the child being half genetically related to you as a couple.

Conceiving naturally - You can conceive naturally and accept the risk of a child inheriting the gene.

Adoption - A more lengthy process but very rewarding for families.

Pre-implantation genetic testing (PGT-M)

PGT-M (formally known as pre-implantation genetic diagnosis - PGD) is a kind of IVF; a procedure where a woman usually takes drugs to enhance egg production, and then the eggs are removed from her ovaries and fertilised with sperm to create embryos in a laboratory. These are then returned to the woman’s body in the hope of a pregnancy. As Huntington's is a genetic condition caused by one gene it is known as 'monogenic' or 'M' in PGT-M

In the case of PGT-M, after the fertilised embryos have developed for a few days, one or two cells are removed from each one. The genetic material (DNA and chromosomes) from the cells is then tested for a particular disorder, in this case, Huntington’s disease. Up to two unaffected embryos are then transferred into the woman’s uterus. If the pregnancy is successful, the baby should not be affected by the disorder it was tested for.

PGT-M is the only way for parents to have an unaffected child to whom they are both biological parents, without risking the need for the termination of pregnancy. It is not an easy option.

Like all IVF, it is a physically and emotionally demanding process, especially for the woman, and it may not result in a pregnancy. It requires a highly skilled technical team and laboratory set up which means only a few places deliver this service.

The NHS Commissioning Board will pay for three cycles of pre-implantation genetic testing (PGT-M) for couples who have a proven genetic disorder and who wish to avoid the birth of an affected child, in accordance with the criteria outlined in Clinical Commissioning Policy: Pre-implantation Genetic Diagnosis, April 2013.

How PGT-M works presentation

PGT-M Facebook support group

Prenatal diagnosis (PND)

Prenatal diagnosis is where the person conceives naturally, and, if successful, undergoes a test called prenatal diagnosis (PND), to find out if the developing embryo is affected. This is sometimes known as chorionic villus sampling (CVS). In most cases, this test is only carried out if you intend to terminate the pregnancy if the embryo is found to have the faulty Huntington’s gene (although if you change your mind, this cannot be enforced).

If you go through this option there is lots of support available on your journey. We know that some of our community have been supported by the Antinatal Results and Choices - ARC charity on their embryo testing journey.

Visit the ARC website

Use of donated eggs, sperm or embryos

Another way you could conceive a child is through donated eggs, sperm or embryo. This means the child is not genetically related either to you or to your partner, or - in the case of a donated embryo - to either of you. It does however give you or your partner the chance to experience pregnancy and childbirth, and to raise a child from the very beginning of life.

Depending on the treatment you need, you may well be looking at assisted conception via IVF, so again, this is not an easy option but it is a way of avoiding the risk of Huntington’s disease.

As with other kinds of assisted conception, it can be demanding, and funding for cycles to attempt it might be an issue.
For more information about clinics, PGD and other assisted conception techniques, visit the Human Fertilisation and Embryology Authority website. You can also seek information from the Genetic Alliance UK.

Visit Human Fertilisation and Embryology Authority website

Adoption

Thousands of people in the UK and across the world adopt children of all ages and this is also an option that could be open to you. Local authorities and other organisations, including some charities, match people seeking to adopt with children needing a family. The process is not easy and can take a long time, but it might work for you.

Your health and ability to look after a child will, however, be a factor under consideration, so you would have to explore your own situation and what you are capable of taking on, before becoming an adoptive parent.

More information about adoption is available from several organisations including Adoption UK and your local authority, among others.

Visit Adoption UK website

FAQs

Who can access the service?

Anyone ages 8-25 who has Huntington's in their family (including extended family such as a cousin or grandparent).

Is HDYES confidential?

Most of the time we can keep what you have said confidential. There might be times when we might need to tell someone if we think your life is in danger now or in the future.

Can anyone contact HDYES?

You can contact us directly but if you are under 16 you will need to get consent from a parent, guardian or carer. Any member of the family or a friend can contact us as well as professionals such as doctors, social workers teachers.

Can you help me speak with my teacher or employer?

Yes. We can talk to them directly, help you talk with them or even offer training in schools, to health care professionals or workplace to help them understand your needs better.