Huntingtons disease

"Huntington's disease | NHS inform | NHS inform Home Illnesses and conditions Symptoms and self-help Tests and treatments Healthy living Care, support and rights Scotlands Service Directory 0 Home Illnesses and conditions Brain, nerves and spinal cord Huntingtons disease Huntingtons disease Huntingtons disease is a condition that damages nerve cells in the brain causing them to stop working properly. Its passed on (inherited) from a persons parents. The damage to the brain gets worse over time. It can affect movement, cognition (perception, awareness, thinking, judgement) and mental health. Symptoms of Huntingtons disease People can start to show the symptoms of Huntingtons disease at almost any age. Most will develop problems between the ages of 30 and 50. The condition gradually gets worse for around 10-25 years, until the person dies. Early symptoms Behavioural changes are often the first symptoms of Huntingtons disease. These changes often include: a lack of emotions and not recognising the needs of others periods of aggression, excitement, depression , antisocial behaviour and anger apathy  causing a person to appear lazy or have a lack of interest in hygiene and self care difficulty concentrating on more than one task and handling complex situations irritability and impulsiveness Speak to your GP if: youre worried you might have early symptoms of Huntingtons disease, especially if theres a history of the condition in your family Later symptoms Further symptoms of Huntingtons might include: psychiatric problems  some people develop obsessive behaviours , delusional thoughts or behaviours, stubborness, lack of self awareness, or suicidal thoughts uncontrollable movements of the face, jerking, clicking or fidgety movements of the limbs and body difficulty eating because the mouth and throat muscles dont work properly which can lead to choking and chest infections communication problems  difficulty putting thoughts into words and slurring of speech sexual problems  a loss of interest in sex or making inappropriate sexual demands balance problems In the later stages of Huntingtons disease, the person will need full nursing care. Death is usually from a secondary cause, like pneumonia or another infection. You might find the palliative care section useful if youre caring for someone whos dying, or if you want to plan your end of life care. Juvenile Huntingtons disease Juvenile Huntingtons disease is a rare form of the condition that can occur in people under the age of 20. Common signs include: a rapid decline in school performance changes in handwriting problems with movement, such as slowness, stiffness, tremor or muscle twitching (similar to the features of Parkinsons disease ) seizures (fits) Causes of Huntingtons disease Huntingtons disease is caused by a faulty gene. Cells in parts of the brain are very sensitive to the effects of the faulty gene. This makes them function poorly and eventually die. A parent with the Huntingtons disease gene has one good copy of the gene and one faulty copy. This means theres a: 50:50 chance that each of their children will develop Huntingtons disease  affected children can pass the gene to children they may have 50:50 chance that each of their children wont develop Huntingtons disease  unaffected children cant pass the gene to children they may have Its difficult to predict how old a child will be when they develop the condition if they inherit the abnormal gene. In around 3% of cases of Huntingtons disease, theres no obvious family history of the condition. This could be because relatives with the condition died before they were diagnosed with it. In rare cases, its due to a new fault in the gene that causes Huntingtons disease. Diagnosing Huntingtons disease If you have symptoms of Huntingtons disease, your GP will refer you to a specialist clinician. The specialist will ask about your symptoms to: see if its likely you have Huntingtons disease rule out similar conditions Theyll examine you and test your thinking, eye movements, balance and walking. Theyll find out if you have any involuntary movements, such as chorea (fidgety or jerky movements). Tests to diagnose Huntingtons disease You might have genetic testing to confirm if you have Huntingtons disease if: youre showing symptoms of the condition and it runs in your family your doctor strongly suspects you have the condition Diagnosis is based on the doctor recognising a number of factors like neurological examination, family history and genetic testing. Genetic test The children of someone with Huntingtons disease can take a genetic test after the age of 18 to see whether theyve inherited the faulty gene. Its possible to have the gene change and still be healthy when youre tested. This is known as premanifest Huntingtons disease. If theyve inherited the faulty gene, theyll develop Huntingtons disease, but its not possible to work out when. You can ask your GP or neurologist for an appointment at a genetic clinic. Youll receive some counselling and blood samples will be taken. Your DNA from the blood samples will be analysed to see whether you have inherited the faulty gene. Scottish Huntingtons Association has a national youth service to help and support children and young people who are living within a Huntingtons family. Brain scan In the early stages of Huntingtons disease, there may not be any specific changes on the brain scan. A doctor might use a brain scan if theyre concerned there may be other problems in addition to Huntingtons disease. A brain scan may involve having a computerised tomography (CT scan) or a magnetic resonance imaging (MRI) scan . Getting tested in pregnancy If youre pregnant and know you have the Huntingtons disease gene, its possible for your unborn baby to be tested during pregnancy at 11 weeks. You can discuss this with a genetic counselling team. Preimplantation genetic diagnosis Preimplantation genetic diagnosis can be used when one partner is known to have or is at risk of having the faulty gene. It involves having in vitro fertilisation (IVF) treatment. The embryo is genetically tested to make sure it doesnt have the faulty gene before being implanted into the womb. Should I get tested? Not everyone wants to know if theyve inherited the faulty gene. Its a personal choice. Some people say they would rather not know because they want to enjoy their life and they may die of other causes before the condition develops. If youre considering genetic testing, your GP will refer you to a genetic counsellor first. Treating Huntingtons disease Theres no cure for Huntingtons disease. Medication and therapies can help treat some of the symptoms. Speech and language therapy and occupational therapy, can help with communication and day-to-day living. Regular exercise is also very important. People who are active tend to feel much better physically and mentally than those who dont. Medication for Huntingtons disease Most of these medications have side effects, like tiredness. It can sometimes be difficult to tell if the side effects are symptoms of the condition or a result of the medication. Antidepressants to treat depression Antidepressants can help improve mood swings and treat depression . Mood stabilisers to treat irritability or mood swings Mood stabilisers may be considered as a treatment for irritability. Some mood stabilizers cant be used during pregnancy. Medication to suppress involuntary movements Medication can suppress involuntary movements. In the UK, antipsychotic medicines are usually preferred. Antipsychotic medication might help control delusions and violent outbursts, but they can have severe side effects, such as: stiffness and rigidity sedation moving slowly Living with Huntingtons disease Help is available to assist people with Huntingtons disease in their day-to-day life. This might include physiotherapy, occupational therapy and speech therapy. Daily routines such as getting dressed and eating meals can be frustrating and exhausting. The types of help outlined below aim to ease the strain of the condition by improving skills that may deteriorate. Help with communication Speech and language therapy can improve communication skills, and memory. It can help with swallowing problems . Communication aids can sometimes be helpful, as they allow communication without the need for talking. For example, you can point to symbols on a chart to show your mood or whether youre hungry. The family of someone with Huntingtons disease can try alternative ways of communicating if speech is a problem. Help with mealtimes People with Huntingtons disease might need to have a high-calorie diet. A dietitian can help you work out an appropriate diet plan. Food should be easy to chew, swallow and digest. It can be cut into small pieces or pured to prevent choking. Feeding equipment like special straws and non-slip mats can help. At some point, you might be offered a feeding tube that goes into the stomach. If a person doesnt want to be artificially fed, they should tell their family and doctor. They may want to consider making an advance decision (a living will) or a statement of wishes and preferences. Occupational therapy An occupational therapist (OT) can help with day-to-day activities. Your home can be adapted by social services to make life easier for a person with Huntingtons disease. You might also need to think about wheelchair access. Read more about occupational therapy and how it can help. Physiotherapy A physiotherapist can help with mobility and balance. It uses a range of treatments, including manipulation, massage, exercise, electrotherapy and hydrotherapy. You may be referred to a physiotherapist through your GP or social services. Current research Research is underway to find disease-modifying medication and new treatments for Huntingtons disease. Progress has been made in identifying potential ways of slowing down or halting the condition by switching off the faulty gene that causes Huntingtons disease. Speak to your healthcare professional if youre interested in taking part in research for Huntingtons disease. Financial information and support Its worth finding out what benefits you may be entitled to if you have Huntingtons disease, or if youre looking after someone with the condition. The Scottish Huntingtons Association Financial Wellbeing Service provides information, confidential advice and support to people living with Huntingtons disease. You can also contact the Citizens Advice Bureau (CAB) Read more about benefits if you need care, and carers benefits Driving A person diagnosed with Huntingtons disease whos started to experience symptoms should inform the Driver and Vehicle Licensing Agency (DVLA). The condition will affect their ability to drive. The DVLA will write to your doctor, with your permission, to ask for their opinion about your condition. Based on that information, theyll decide whether you can still drive and for how long before another assessment is needed. Theres no need to tell the DVLA if youre carrying the faulty gene but havent yet developed symptoms. You can view the National Care Framework for Huntingtons Disease on the Scottish Huntingtons Association (SHA) website. The SHA employs Huntingtons Disease (HD) Specialists in many areas of Scotland who work as part of multi-disciplinary teams along with HD Clinical Leads , physiotherapy, occupational therapy and speech therapy. Source: Scottish Government - Opens in new browser window Last updated: 14 March 2024 How can we improve this page? Help us improve NHS inform Thank You Your feedback has been received Dont include personal information e.g. name, location or any personal health conditions. Email Address e.g. you@example.com Message Maximum of 500 characters Send feedback Add this page to\n            Info For Me Other health sites Scottish Huntington's Association NHS inform About NHS inform Editorial policy Contact us Webchat Give feedback about NHS inform Info for Me tool Terms and conditions Privacy and cookies policy Freedom of information (FOI) Accessibility Other languages and formats  2023 NHS 24  v1.1.1.17852"