Symptoms of Huntington’s disease change as the condition progresses. You may not notice the early symptoms of Huntington's disease. This is because they are mild at first and people without the disease can have the same symptoms for other reasons.
Early symptoms include:
- a mild tremor
- lack of concentration
- short-term memory problems
- mood changes
These symptoms may be caused by problems other than Huntington’s disease, but if you have any of these symptoms, see your GP for advice.
Later symptoms fall into three categories – physical, emotional and behavioural. Over time, these symptoms get worse and you’re likely to need more care from other people.
You may have some of the following symptoms.
- Involuntary fidgeting movements of your limbs, face and body called chorea. This may start in your face, hands and feet and gradually spread over time to the rest of your body.
- Difficulty co-ordinating your movements. This will get gradually worse as the disease progresses.
- Difficulty gripping objects. You may become clumsy and drop things.
- Difficulty walking. You may become unsteady and fall over more often.
- Speech problems. You may sound like you’re slurring.
- Difficulty swallowing. This can lead to food or drink going down your windpipe, causing you to choke.
- Weight loss. This can happen because you're having difficulty eating and drinking, and because you're burning more calories due to the continuous movements of chorea.
Emotional symptoms include depression, not only because of the difficulties you may face by having a progressive disease but also as a direct result of the damage to certain brain cells. Other symptoms include:
- frustration at being unable to work or do simple tasks
- behaving stubbornly
- having mood swings
- becoming more irritable and antisocial
- having fewer inhibitions
- difficulty controlling your anger
- becoming more aggressive
The behavioural symptoms of Huntington's disease are often the most distressing for you, your family and your carers. Your personality can become gradually more self-centred and unmotivated, putting a strain on personal relationships. You may appear lazy or uninterested in life, spending days doing little or neglecting your personal hygiene.
There are a number of other behavioural symptoms, which include:
- a loss of drive and initiative
- more difficulty with problem-solving, judgement, attention and concentration
- losing the ability to organise yourself and to do more than one task at a time
- memory loss
- finding it more difficult to understand speech
Symptoms of juvenile Huntington's disease
If you have juvenile Huntington’s disease, your symptoms will be similar to those of Huntington's disease, but you’re more likely to have muscular rigidity (stiff muscles) and less likely to have involuntary movements (chorea). Early symptoms of juvenile Huntington’s disease may be similar to those of Parkinson’s disease.
If you have juvenile Huntington's disease, you will usually first develop symptoms in your teens. You may be irritable and aggressive, or start to act out of character, possibly displaying inappropriate social or sexual behaviour.
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.
Your GP will ask you about your symptoms and examine you. He or she will usually ask you about your medical history and that of your family. Your GP may ask you to carry out some simple tasks to assess any chorea that you may have.
You may have symptoms of Huntington's disease for a long time before you’re diagnosed. Depending on your symptoms and family medical history, your GP may refer you to a genetics clinic, a Huntington’s disease multidisciplinary clinic, or a neurologist or psychiatrist to confirm your diagnosis. The only way to be sure that your symptoms are caused by Huntington’s disease is to have a genetic test.
The genetic tests fall into three categories: diagnostic, pre-symptomatic predictive and prenatal. Whichever test you’re offered, you will be offered genetic counselling before you have the test because there are many complex issues to discuss and consider. See our frequently asked questions for more information.
These tests are carried out if you have symptoms of Huntington's disease. You will have two blood tests. The results of these tests will take between four and six weeks to come back.
Pre-symptomatic predictive tests
These tests are carried out if you have no symptoms of Huntington's disease, but you have family members who are affected by it. The tests will show whether or not you have inherited the Huntington’s disease gene, but not when you may begin to show symptoms.
The decision to have these tests is a serious one and you're advised not to rush into making a decision. A positive result can be devastating as it means that one day you will most likely become seriously ill. Many people prefer not to find out and instead aim to live their lives to the full. There are also issues surrounding testing if your parents haven't been tested. This is because if you have a positive result, it means that one of your parents also has the faulty gene, even if they don’t yet have any symptoms.
In the UK, you can't have pre-symptomatic tests if you're under 18.
These tests can be carried out on your unborn baby if your family is affected by Huntington's disease. Prenatal tests are done between week 11 and 13 of pregnancy. For more information about what a prenatal test involves, please see our frequently asked questions.
At the moment, there is no cure for Huntington's disease, but there are ways to manage your symptoms. You will be referred to a Huntington’s disease multidisciplinary clinic, where a number of different health professionals will work together as a team to help you and your family.
Your neurologist may prescribe you medicines to reduce your involuntary movements and to alleviate depression. Mood stabilisers and antipsychotic medicines can also help with some of the emotional disturbances that you may have.
At the multidisciplinary clinic, the members of the team who may become involved in your care include the following.
- Speech and language therapists can help improve your communication and help you to swallow.
- Dietitians can advise you on adequate calorie and nutrient intake to stop weight loss.
- Occupational therapists can provide you with equipment to help you eat, such as non-slip mats and straws, and help to make your home safer by adapting it to your needs.
- Physiotherapists can help with any balance or musculoskeletal problems.
Counselling and support groups can be helpful, both for you and your family.
Huntington's disease is caused by a faulty gene that runs in families. In people with Huntington’s disease, this gene is longer in size than in people without the disease, which is what makes it faulty. The longer the faulty gene, the more chance you have of developing the disease and passing it on to your children. The gene produces a protein called Huntingtin. Scientists are still researching how this faulty gene 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 will go on to develop the disease at some point in your life.
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 each child.
Around three in 100 people with Huntington's disease have no family history of the condition. This may happen when relatives from previous generations weren't diagnosed with Huntington's disease because reliable testing wasn’t available at the time. However, genetic testing is far more reliable now, making it easier to get a diagnosis.
As your later symptoms get worse, you may have complications. These include:
- poor muscle control and weakness
- difficulty with eating and drinking
- problems with speaking and talking to others
- changes in your usual emotions, behaviour and personality, for example, being more aggressive or having memory problems
You may need more care provided by either your family, friends or 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 receive may help you to maintain more independence and help your family to cope as your disease progresses.
It’s possible that having Huntington’s disease may lead to you having suicidal thoughts, but you may find that taking antidepressant medicines helps prevent this.
Having a baby
If you know that you carry the gene for Huntington's disease, you can choose to have in vitro fertilisation (IVF), where embryos are tested for the Huntington's disease gene and only those that don't carry the faulty gene are placed in your womb. This is called pre-implantation genetic diagnosis.
In the UK, pre-implantation genetic diagnosis is only available to parents who already know that they carry the gene for Huntington's disease. This is only available at certain clinics licensed by the Human Fertilisation and Embryology Authority.
Scientists are investigating several medicines that could slow the progression of Huntington's disease. Some of these have shown promise and are being tested in clinical trials. Examples include the nutritional supplement, coenzyme Q10, and memantine, which is already used to treat people with severe Alzheimer’s disease.
Some clinical studies have used stem cells (the most basic form of cells from which others develop) to grow cells that can be transplanted into the brain of people with Huntington's disease to improve their symptoms. However, research is still in the very early stages.
Scientists are also hopeful that research into RNA interference (RNAi), which can potentially shut off any gene in the body, may lead to an effective treatment in the future by stopping the production of the Huntingtin protein.
How can I tell my child that I have the gene for Huntington's disease?
It can be very difficult for you to explain to your child about Huntington's disease. You will need to consider the effects of the disease on you as a parent and how it can be passed on genetically.
There is never a right time to tell your child that you have the gene for Huntington's disease and that he or she has a chance of carrying it. However, it's important not to avoid the subject because your child will learn about it at some point and may be angry that you didn't talk to him or her sooner.
Research shows that adults who weren't told as children often feel angry and resentful that the information was hidden from them. As your child grows up, he or she will make decisions based on his or her hopes for the future. However, once he or she knows that there is a one in two chance that he or she has inherited a degenerative condition, this can change his or her viewpoint in major life decisions, such as getting married or having children.
Being honest and open with your child will help him or her to make decisions about their future plans, as well as coming to terms with and coping with your illness.
How you go about telling your child will depend on his or her age, and whether or not you have started to develop symptoms. You may want to write down some questions that you think your child may ask and research the answers so that you are well prepared.
Children can be very resilient and adaptable, and you may be surprised by how well your child copes when you tell him or her.
If you feel you want some support to help you when talking to your child, the Huntington's Disease Association has a team of regional care advisers and genetic counsellors who can provide useful advice initially, give ongoing support to you and your family, and put you in touch with other families dealing with a similar situation.
How long do people with Huntington's disease live for?
People with Huntington's disease usually live for 15 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 and this may also mean a more rapid progression. However, generally, the survival time from the first symptoms is around 15 to 20 years. As the disease progresses, poor coordination, falls, malnutrition and exhaustion become increasingly serious and death is generally caused by heart failure or pneumonia.
I have the faulty gene that causes Huntington's disease. Is there any way to prevent the condition developing?
No, if you have inherited the faulty gene, you will be very likely to develop the disease at some point in your life.
Genes are bits of code inside each of your cells that tell them what to do. Your genes determine your characteristics, such as your hair and eye colour, and act as a plan for how your body grows and develops. In particular, each gene acts as an instruction for your cells on how to make proteins – the building blocks of body tissues, such as your muscle, skin and nerves. Different genes are active or inactive (turned off) in different cells throughout your life.
In Huntington's disease, a faulty gene leads to the production of a harmful protein called Huntingtin. This protein contains too many repeats of one amino acid called glutamine. Amino acids are the building blocks of proteins and genes control which ones are joined together and in what order. The high number of glutamines in the Huntingtin protein prevents it being broken down properly and it builds up in the cells in your brain. This damages your brain cells and leads to the symptoms of the disease. However, researchers don’t yet know exactly how the build up of the Huntingtin protein in your brain cells causes the problems that you may have.
Having a fault in a gene is called a mutation and in Huntington’s disease, this mutation can vary in length, caused by the number of repeats of glutamine. The length of the mutation has an effect on the age at which you develop the disease and how severe it is. The shorter the mutation, the more likely it is that you won't develop the disease until later in your life and your symptoms may be milder. The size of the mutation can change between generations. Rarely, some children develop symptoms aged just two, while some adults won’t show symptoms until their eighties, although most people begin to show symptoms between the ages of 30 and 50.
Currently, there is no way to turn off the faulty gene and stop your cells making the harmful Huntingtin protein. Research into a treatment called RNA interference (RNAi) is trying to find a way of doing this, but it may be many years before an effective treatment that prevents or treats Huntington's disease is developed.
I’m pregnant and have a family history of Huntington’s disease. What tests are available for my unborn baby?
You may be offered a prenatal genetic test for Huntington’s disease. This needs to be carried out between week 11 and 13 of your pregnancy.
The tests involve taking cells from inside your womb, which means there are some risks to you and your unborn baby, such as from an infection or premature labour. Prenatal tests can be used to determine if your unborn child has the faulty Huntingtin gene. The tests are only carried out on the understanding that you would have an abortion if the test result is positive in your unborn child. The reason for this stipulation is that otherwise you would be bringing up your child knowing that he or she will develop Huntington’s disease at some point in his or her life, but your child did not consent to the test being carried out. A positive diagnosis in your unborn child could affect you and your family because it’s possible that other relatives have inherited the Huntington’s disease gene, but would prefer not to find out.
If you’re pregnant or thinking of trying to get pregnant and have a family history of Huntington’s disease, your GP may be able to refer you to a Huntington’s disease multidisciplinary clinic to find out more about the condition and the tests that are available.
My parents don't have Huntington's disease and there is no history of it in my family, but my dad's sister has just been diagnosed with it. Am I at risk?
There is a risk, but it's much lower than if one of your parents is affected. You will need to discuss your individual circumstances with a genetic counsellor.
The gene that causes Huntington's disease comes in different forms. It seems that the longer the gene, the more likely it is to cause Huntington's disease. In some people, the gene is not quite long enough to trigger the disease. The gene can also be unstable, which means that instead of passing on an exact copy of their own gene, a parent passes on a longer or shorter version. When a longer version is passed on in this way, an unaffected parent can have a child who carries the faulty Huntington’s gene and who goes on to develop the disease. This helps to explain why Huntington's disease can appear in a family where nobody has previously had the condition.
If your father's sister is affected by Huntington's disease, it's possible that your father could be carrying the unstable form of the gene. You may wish to consider having genetic counselling and testing. Speak to your GP for advice.
What is involved in genetic testing for Huntington’s disease?
If you're over 18 and Huntington's disease runs in your family, you can choose to have a genetic test to find out whether you're carrying the faulty gene. Two samples of blood will be taken from a vein in your arm. Your blood is then tested in a laboratory to look for the faulty gene. It shows up because it is longer than the usual gene.
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.
However, if you're over 18 and have decided that you do want to find out, ask your GP to arrange an appointment at a genetics clinic or Huntington’s disease clinic in your region. The decision to be tested should be voluntary – don't feel under pressure from anyone else.
At the clinic, you will first have about three sessions of counselling. This will involve talking about how you would cope with any bad news, who you would pass on news of the results to and how. You will also have the chance to discuss how the implications of a positive result in your blood test could affect other members of your family. For example, your parents will know that they too are at risk of developing Huntington’s disease. It may be that they would prefer not to find out. If you have already had a child, you will know that he or she has a one in two chance of having inherited the faulty gene from you. Your brothers or sisters may be affected too.
This type of testing can be emotionally very difficult. The results may offer great relief if they are negative, but if positive, they may change your views on your future, for example, having children or more children.
If you decide to go ahead with the tests, it will take four to six weeks for the results to come back. If the results come back positive, you will be offered further counselling.
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