About Huntington’s disease
Huntington's disease causes progressive damage to cells in areas of your brain called the basal ganglia and cerebral cortex. These areas are involved in your control of movement and the way you think, understand and remember. Huntington's disease used to be called Huntington's chorea. Chorea means jerky, involuntary movements – this is one of the main symptoms. It was first described by George Huntington in 1872.
Most people with Huntington's disease develop symptoms between the ages of 30 and 50, but it can start at any age. Symptoms differ from person to person, but get gradually worse, usually over a period of about 10 to 20 years until the person dies. According to research in the UK, it’s thought Huntington’s disease affects between one in 10,000 and one in 20,000 people. The disease affects men and women equally.
Juvenile Huntington's disease is a type of Huntington's disease that develops before you're 20. It is usually more severe and starts more like Parkinson’s disease. It is rare and affects around 6 out of 100 people with Huntington's disease.
Causes of Huntington’s disease
Huntington's disease is caused by a faulty gene that runs in families. The gene produces a protein called huntingtin. The fault in this gene is that it is longer in people with Huntington’s disease than in people without the disease. The longer the faulty gene, the earlier your symptoms may start. Scientists are still researching how this faulty gene actually causes the disease.
Genes are present in two copies: one from your mother and one from your father. The faulty gene that causes Huntington's disease is dominant. This means that if you inherit a copy of this gene from either parent, you’ll develop the disease at some point in your life. This is known as autosomal dominant inheritance (see diagram).
If you have one parent with Huntington's disease, you have a one in two chance of inheriting the faulty gene. The risk is one in two for every child who has one parent with Huntington’s disease. Most people with juvenile Huntington’s disease inherit it from their dad.
Around five in 100 people with Huntington's disease have no known family history of the condition. This may sometimes be explained by the early death of an affected parent before their symptoms appear, by adoption or even by mistaken paternity. Or their parent may have been misdiagnosed with a different condition that has similar symptoms, like dementia. These days, genetic testing is very reliable, making it easier to get a diagnosis. Only a small number of people with Huntington’s disease really don’t have a family history of the condition.
Symptoms of Huntington’s disease
Symptoms of Huntington’s disease change as the condition progresses. You may not notice the early symptoms, particularly if you don’t know the condition runs in your family. Symptoms may change and progress slowly so you may have symptoms for a long time – as long as 15 years – before you’re diagnosed. Some changes in your behaviour may be causing problems at home or at work before you get a diagnosis.
The first signs of Huntington’s include:
- uncontrollable fidgeting and facial grimaces
- stumbling and clumsiness
- loss of interest in things and poor concentration
- irritability and aggression
- short-term memory problems
- mood and personality changes
- paranoia and, rarely, psychosis
These symptoms are non-specific and are more commonly caused by problems other than Huntington’s disease. But if you have a combination of these, you should see your GP for advice. Most people already know if Huntington’s runs in their family, and it’s important to tell your doctor this. It’s very rare not to know, but if you’re unaware there’s a history in your family and you’re worried about symptoms you’re having, see your GP.
Later symptoms fall into three categories.
- Physical symptoms which mainly affect your movement.
- Behavioural symptoms that affect your mood, emotions and personality.
- Cognitive symptoms – these mainly affect the way you think, remember, learn and understand.
Over time, you’re likely to need more care from other people.
The physical symptoms of Huntington’s disease include the following:
- involuntary fidgeting movements of your limbs, face and body (this is called chorea); these movements may start in your hands and feet facial tics and slow eye movement
- problems with co-ordination and general clumsiness
- difficulty walking so you become unsteady and trip or fall over more often
- slowed speech that other people may find it difficult to understand
- difficulty swallowing that may lead to food or drink going down your windpipe, causing you to choke
- weight loss, possibly because it’s harder to eat and drink, or the disease may affect your metabolism
Behavioural symptoms affect your mood, emotions and personality. These are often the most distressing for you, your family and your carers. Your personality can gradually become more self-centred and unmotivated, putting a strain on personal relationships.
Changes to your mood may include depression, which is thought to be a direct result of the damage to certain brain cells. Other symptoms include:
- change in personality, habits and interests
- frustration at being unable to work or do simple tasks
- paying less attention to personal hygiene
- having mood swings
- becoming more irritable and antisocial
- having fewer inhibitions and behaving inappropriately or impulsively (such as changes in sexual behaviour, gambling or making snap decisions)
- difficulty controlling your temper
- becoming more aggressive
- obsessive behaviour, including having rituals you need to stick to
- feeling anxious, paranoid and suspicious about other people
The cognitive symptoms of Huntington's disease affect your memory and the way you think, learn, understand and plan. They may begin as much as 15 years before you notice any physical symptoms. You could put these down to other things like general forgetfulness.
Cognitive symptoms include:
- a loss of drive and initiative
- more difficulty with problem-solving, judgement, attention and concentration, and generally processing information more slowly
- losing the ability to organise yourself and to do more than one task at a time
- needing more routine
- finding it difficult to put thoughts into words
- getting stuck on certain words and phrases and repeating them
- memory loss and forgetting how to do familiar tasks
Symptoms of juvenile Huntington's disease
If you or your child has juvenile Huntington’s disease, the early symptoms may be different from those of an adult with Huntington's disease. Generally children and younger people are more likely to have muscular rigidity (stiff muscles) and less likely to have involuntary fidgeting and twitching movements (chorea). Slow eye movement is typical of juvenile Huntington’s disease.
The first symptom of juvenile Huntington's disease is often a decline in how well you do at school – for example, your grades might drop. You may find it increasingly difficult to pay attention and concentrate. Everyday actions that were once easy may become hard, even speaking and walking, and you get clumsy. You may be irritable and aggressive, or start to act out of character, possibly displaying inappropriate social or sexual behaviour.
Juvenile Huntington’s disease can be very isolating. Young people with the condition may also develop epilepsy.
These symptoms may be caused by problems other than juvenile Huntington’s disease. If you or your child has any of these symptoms, see your GP for advice. Confirming a diagnosis of juvenile Huntington’s disease may be difficult and take a long time because the disease is very rare.
Diagnosis of Huntington’s disease
If you’re displaying symptoms of Huntington’s, your GP will refer you to a specialist. This might be to a genetics clinic, a Huntington’s disease multidisciplinary clinic, or a neurologist or psychiatrist to confirm your diagnosis.
At the clinic, you’ll have examinations to check for involuntary movements (chorea), abnormal eye movements and other possible symptoms you may have. They may ask you to repeat certain phrases to see if your speech is affected. Your doctor may ask you to stand up and walk around for a few minutes to see how you’re moving.
Your doctor may be able to say that you are likely to have Huntington’s disease from your symptoms and your family history. But the only way to be sure that you have Huntington’s disease is to have a genetic test.
There are two main types of genetic test – diagnostic and pre-symptomatic predictive. There’s also a prenatal test for unborn children.
Whichever test is appropriate, your doctor will offer you genetic counselling before you decide to have it. This is because there are lots of complex and difficult issues to discuss and consider. You’ll usually have three or more special counselling sessions to help you decide. When you confirm your consent to having the test, the counselling team may also sign the consent form to show you’ve made a fully informed and voluntary decision.
Tests for Huntington’s disease
This is a blood test that is usually offered to confirm a diagnosis if you already have symptoms of Huntington's disease. Your doctor will give you information on the condition as well as counselling before making a decision on whether to have the test or not. You’ll be able to ask questions and think through the consequences of knowing for certain you have Huntington’s disease. You will probably want to talk to family and friends first as well. A definite diagnosis will affect them too.
You’ll have two blood samples taken to check the results. The results of this test take a few weeks to come back. You’ll receive the results in person. They are confidential but you may want to have someone with you for support when you get them.
Pre-symptomatic predictive test
This is a test you can have if you have no symptoms of Huntington's disease but have family members who are affected by it. It’s a big decision to make and you will be offered genetic counselling to help you decide whether or not to have the test. The test will show if you’ve got the Huntington’s disease gene. But it can’t show when you’ll begin to show symptoms, how severe these will be or how quickly the disease will progress.
The decision to have this test is a serious one – don’t be rushed or pressured by anyone else into deciding to have it or not. Once you have the result, you can’t ‘unknow’ it. A positive result can be devastating. It means that one day you will become seriously ill, and your children (if you have any) may also carry the faulty gene. However, some people want to find out so they can plan ahead and live as well as they can.
You also need to consider the impact of your test results on other family members, including your parents, if they haven't shown symptoms or been tested. If you have a positive result, it means that one of your parents has the faulty gene. It also means that any brothers and sisters you have might also have it. But they may not want to know that. A positive result can also bring up family issues like adoption and paternity that have been secret.
The predictive testing process can take some time. Tests are done at specialist centres. You’ll give blood samples and have several sessions with genetics health experts. It can take months to get the results from the laboratory.
If you have the test, you’ll be offered counselling afterwards, and possibly support from a psychologist, to help you handle the result. You and your family may find it helpful to talk to other people going through the same thing. Your doctor or counsellor can direct you to a Huntington’s disease support group or other resources.
In the UK, pre-symptomatic tests are not usually carried out on children under 18, unless there’s a strong medical reason for it. Otherwise it’s left to the individual to make their own decision about getting tested when they’re old enough to understand the implications.
If you’re pregnant and you or your partner has a family history of Huntington’s disease, or been diagnosed with it, prenatal tests are available to see if your child has inherited the faulty gene. The clinic you’re with can give you specialist advice about what these tests involve.
You’ll be offered counselling before and after having the test, and will need to give your informed consent. It’s a very important step because you’ll need to decide about terminating the pregnancy if it’s a positive result. You’ll need to think about how your child might feel growing up knowing they may develop a serious condition. You’ll have to consider when and how to tell them. The fact it was not their choice to find out if they’ve got the gene is also an issue.
If you or your partner is at risk but don’t know for sure if you carry the faulty gene, a positive prenatal test result will confirm this.
These are very difficult issues to consider and decisions to make. So it’s really important that you talk through the options and potential outcomes and how you might cope with them.
There are two main types of test once you are pregnant. Chorionic villus sampling (CVS) can be carried out between weeks 11 and 13 of your pregnancy. It involves taking cells from inside your womb, which means there are some risks to you and your unborn baby, such as premature labour. Amniocentesis is normally carried out when you’re 15 to 16 weeks pregnant. This takes a sample of amniotic fluid for testing. There’s less risk of premature labour with amniocentesis but CVS means you get a diagnosis earlier.
Doctors will examine the cells to see if your unborn child has the faulty gene that causes Huntington’s disease.
Preimplantation genetic diagnosis (PGD)
There is an alternative way for at-risk parents to have children who are unaffected by Huntington’s. It’s called preimplantation genetic diagnosis (PGD) where embryos are created by in vitro fertilisation (IVF) and only embryos that have a negative result for the Huntington’s gene are implanted in the womb. This means the baby doesn’t have the faulty gene and won’t develop Huntington’s disease. This method carries the same risks as IVF, so it’s important to be fully informed about it. Your specialist can discuss this with you to help you make an informed decision. For more detail about this, see our FAQ: What is pre-implantation genetic diagnosis?
Treatment of Huntington’s disease
Experts are trying to find ways to treat and eventually cure Huntington’s but as yet, there’s neither a cure nor treatment to slow down its progression. But there are ways to help manage your symptoms.
You’ll be looked after in a Huntington’s disease multidisciplinary clinic. This is a centre where a number of different health professionals work together as a team to help you and your family.
Your neurologist may prescribe medicines to reduce your particular symptoms, like involuntary movements (chorea) and irritability. These medicines may have side-effects that your doctor or specialist will monitor. Some side-effects actually have benefits, such as helping you sleep at night or put on weight.
You may also be offered antidepressants and counselling to treat depression if you have it. Lots of people benefit from this. Counselling can help recognise and cope with impulsive behaviour that could put you at risk. Cognitive behavioural therapy (CBT) may be useful if you’ve developed obsessive or ritualistic behaviour, depending on your cognitive symptoms. Mood stabilisers and antipsychotic medicines may also help with emotional disturbances you may have.
At the multidisciplinary clinic, the following members of the team may become involved in your care, tailored to your individual needs.
- Speech and language therapists can help improve your communication and help you to swallow.
- Dietitians can advise you on getting enough calories and nutrients to help stop weight loss. They’ll also help you avoid foods that are hard to swallow and suggest ways to eat more comfortably and safely.
- Occupational therapists can offer advice, equipment, and changes to your home to make daily living easier and safer. They can help with movement and mobility so you’re at less risk of stumbling or falling.
- Physiotherapists can help with any balance or musculoskeletal problems. They may suggest an exercise programme you can do at home.
You’ll be offered physical and emotional support, including through social care and psychiatry services. Clinical nurse specialists can also help with advice and referrals to psychological support and other services if you need them.
Counselling and support groups can be helpful, for both you and your family. Cognitive behavioural therapy may address symptoms like obsessive behaviour. You may find other community services useful if you’re struggling with daily tasks; for example, podiatrists can help to take care of your feet.
Your doctor will want to monitor you every 6 to 12 months or more often if you have any problems. They’ll want to check how you (and your family) are coping physically and emotionally, and if you need extra support or treatment for symptoms.
Living with Huntington’s disease
You need to take care of your general health. In advanced stages, Huntington’s disease makes you more vulnerable to infection, especially if you’ve lost weight or find it hard to swallow. You should make sure you have flu and pneumonia vaccinations, which will also protect against meningitis and septicaemia (blood poisoning). Carers may need to help you get these vaccinations.
People who care for you can help you get the support you need if you struggle to do it yourself. The Huntington’s Disease Association (see Other helpful websites) can put them in touch with specialist care advisers. Your carers need to look after their own health, including having vaccinations so there’s less risk they’ll get and spread infection. They may find local carer support groups useful too.
It’s important to stay physically active. As well as the physical benefits like better balance, simple activities such as walking more can help your confidence and independence. Physical activity may help reduce behavioural symptoms like aggression and anxiety. Studies suggest specially designed exercise programmes you can do at home can help if you’re struggling with everyday movement. You’ll have care from a physiotherapist who can give you advice about staying as active as you can.
You must tell the Driver and Vehicle Licensing Authority (DVLA) if you’ve been diagnosed with Huntington’s disease. You’ll need to complete a CN1 form as this is a ‘notifiable condition’ that could affect your ability to drive safely. You could be fined £1,000 if you don’t. The DVLA may contact your doctor for more details, arrange for you to be examined or ask you to take a driving assessment.
Coping with late stages of Huntington’s disease
Not everyone who has Huntington’s disease follows an identical path in the later stages of the condition. But it’s likely that you’ll have a period, perhaps of some years, where you need care from others.
As your symptoms get worse, you’ll probably have increasing difficulty with normal daily functions such as speaking, eating, walking and caring for yourself physically. Medication and specialist nursing help may help with common problems in the late stages like incontinence and falls. Any behavioural problems you have may change or even lessen as your thinking (cognitive) abilities decline.
Your care may be provided by your family and friends or by your team at a Huntington’s disease multidisciplinary clinic. This is a specialty clinic that provides comprehensive co-ordinated care for people with Huntington’s disease. Changing and increasing the level of care you have may help you to maintain more independence and help your family to cope as your disease progresses. Most people with Huntington’s disease need nursing care of some sort towards the end of their life.
Research into Huntington’s disease cure
A lot of research is going on to try and understand Huntington’s disease better, to help control the symptoms and, eventually, to find a cure.
Experts are trying to find out why the faulty gene in Huntington’s disease causes some types of brain cell to die. This may help in finding treatments such as medicines to correct this or slow it down. Trials are going on to test medicines including some that may control symptoms and some that may be able to stop the disease getting worse.
People with Huntington’s disease can get involved in research in various ways. Studies may look at how the condition develops. These could involve having MRI scans, giving blood or urine samples, or carrying out tests to show how thinking is affected. Other research may trial new treatment or clinical examination, like measuring eye movement.
There is a worldwide observational study into people’s different symptoms. The information from this may help get quicker results from clinical trials and improve standards of care.
Scientists are also finding out if stem cells (the most basic form of cells from which other types of cell develop) could be used in treating Huntington’s. They hope that one day they will be able to grow cells that can be transplanted into the brain of people with Huntington's disease to improve their symptoms. Research is still in the very early stages.
Other research includes how special scanners called positron emission tomography (PET) scanners and functional magnetic resonance imaging (fMRI) scanners can help. These can be used to study chemical abnormalities within the brain of a person with Huntington’s disease.
FAQ: What is pre-implantation genetic diagnosis?
Pre-implantation genetic diagnosis (PGD) is a procedure to help you avoid passing on the condition. It is suitable if you or your partner have Huntington's disease or may have inherited it but have not been tested.
PGD is similar to in vitro fertilisation (IVF) but with an additional step to test your embryos for the Huntington's disease gene. Only those that don't carry the faulty gene are placed in your womb. The embryo test is 98 to 99 per cent accurate. But you may be offered a prenatal test to confirm your baby is not at risk of having Huntington’s disease.
You’ll usually be referred for PGD by your specialist and offered counselling. Initial tests and investigations can take 5 to 12 months. The actual treatment takes 9 to 12 weeks but there’s no guarantee you’ll get pregnant. You may be eligible for three cycles of treatment through the NHS.
In the UK, pre-implantation genetic diagnosis is only available at certain clinics licensed by the Human Fertilisation and Embryology Authority.
FAQ: Does the faulty gene mean I’ll get Huntington's disease?
If you’ve inherited the faulty gene, it’s certain that you’ll develop the disease at some point in your life. But scientists are still trying to find out exactly how this happens.
Genes are bits of code inside each of your cells that tell them what to do. In Huntington's disease, a faulty gene leads to the production of a harmful version of a protein called huntingtin. This protein contains too many repeats of an amino acid called glutamine. The high number of glutamines in the Huntingtin protein stops it breaking down properly so bits build up in your brain cells. This causes damage that leads to the symptoms of the disease.
The length of the faulty gene affects how old you are when you develop the disease and how it progresses.
FAQ: How does genetic testing for Huntington’s disease work?
There are two types of blood test that can find out if you’ve got the abnormal Huntington’s disease gene.
One is diagnostic and will confirm a diagnosis if you’ve already experiencing symptoms and your doctor suspects you have Huntington’s disease.
The other test is predictive. You can choose to have it if you’re over 18 if one of your parents has been affected and it’s therefore possible you’ve inherited the faulty gene.
In both cases, it’s your decision – don't feel under pressure from anyone else to have the test or not.
You’ll be offered lots of information on the disease and at least three counselling sessions to help you decide. This will give you the chance to talk everything through, including how to tell your family if you’ve got Huntington’s disease and they may have it too.
Finding out that you have the gene for Huntington's disease can be very difficult to come to terms with. Some people decide not to be tested because they don't want to know about something they can't change.
Both tests use blood samples from your arm. These will be tested in a laboratory to look for the faulty gene. This can take several weeks for the diagnostic test and months for the predictive test. The results will be confidential and given to you in person. If they come back positive, you’ll be offered further counselling and support.
FAQ: How long do people with Huntington's disease live?
People with Huntington's disease usually live for 10 to 20 years after the first symptoms develop.
The age that a person starts to be affected by Huntington's disease is linked to the length of the faulty gene that causes it. The longer the gene, the earlier symptoms are likely to start.
It’s not clear from research if the disease progresses more quickly in people who have juvenile Huntington’s disease.
As Huntington’s disease progresses, symptoms like falls and malnutrition often get worse, increasing the risk of illness and injury. Younger people may develop epilepsy. Death is usually caused by an accompanying illness such as pneumonia.
It is important to consider the options for end-of-life care as the condition reaches its later stages.
FAQ: When and how do I tell my child?
There’s no right time to tell your child that you have the gene for Huntington's disease and that they have a chance of carrying it. But your child will learn about it at some point and may be angry that you didn't tell them sooner. Research has shown that adults who weren't told as children often feel angry and resentful that the information was kept from them.
Your child may already have noticed changes in you because of your symptoms. Your condition may have caused tensions at home that they’ve picked up on. They could think it’s their fault you’re angry, irritable or anxious. Being honest and open with your child can address their fears and help them cope with your illness.
How you go about telling your child depends on their age, and whether or not you’ve started to develop symptoms. Start with the basics and let them ask questions.
You could research and write down answers to things they may want to know beforehand, so you’re well prepared.
If you’d like some support to help you when talking to your child, contact the Huntington's Disease Association (see Other helpful websites). It has a team of regional care advisers and genetic counsellors who can give useful advice and on-going support to you and your family. It can also put you in touch with other families dealing with a similar situation.
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Reviewed by Natalie Heaton, Specialist Health Editor, Bupa Health Content Team, July 2017
Expert Reviewer Dr Jeremy Rees, Consultant Neurologist
Next review due July 2020
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