Huntington’s disease is caused by an inherited faulty gene in your DNA. If people in your biological family have Huntington’s, you may be at risk of the disease.
Being at 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. 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.
What if you are 25% at risk?
Some people can have a 25% chance of inheriting the disease. This would be the case if a child's grandparent had the disease but the child's parent did not wish to find out or had passed before knowing. Some people who are at 25% risk of the disease wish to know their status.
When a parent chooses not to find out their status and their child who is 25% risk and wants to know, requesting to test becomes complicated due to a 'double disclosure'. This means that finding out a person's 25% risk status could lead to disclosing the status of the 50% at-risk parent who has chosen not to know their status. If a 50% at-risk parent has passed before knowing their status, the 25% at-risk child could request a test. There is still a disclosure risk as this could impact siblings.
If you are 25% risk, we would advise having a conversation with a genetic counsellor to discuss your individual case.
Sources of support
Getting the right information and support for you is vital and we’re here to help. People – in any challenging situation - can find it useful to talk to someone about their feelings, and it doesn’t always seem appropriate to talk to friends and family.
- Specialist Advisers
Your local Specialist Huntington’s Disease Adviser can help and answer questions and provide a listening ear.
- Genetic services
These are often linked with the specialist clinics, they guide people through the process of predictive testing.
- Branch and support groups
Many people find that talking to others who are in a similar situation can really help. We have local branches and support groups that enable people affected by Huntington’s to support each other.
- Youth Engagement Service
If you are under 25, our dedicated youth workers are ready to talk to you about anything that’s worrying you or any questions you have about Huntington’s. Our youth workers also run the Youth Engagement Service (HDYES).
- Events
Each year we hold an Annual General Meeting AGM and family conference for people of all ages. If you would like to get information about the next conference, keep an eye on our events section or contact us to register your interest.
- Specialist clinics
Across the country there are specialist clinics for Huntington’s. They all run differently, but have some of the following: genetic counsellors, neurologists, neuro-psychiatrists, specialist nurses, psychologists and therapists (e.g. physiotherapists). Some clinics also offer the option of becoming involved in research.
Clinics may be useful for a variety of people affected by Huntington’s – not just for people who have symptoms.
Thinking about the future
If you're at risk you may want to start thinking about things that could help you in the future. Click on the below tabs to find out more. If you would like to find out more about genetic testing and to see if it is right for you you can also follow the link below.
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.
Building up reserves in the brain
Another well-known phrase: ‘use it or lose it’. A less familiar term is ‘neural reserve’ or 'brain resilience'. The use it or lose it principle refers to doing things now, so you build your capacity up to be stronger in the future.
Imagine a man who has a go riding a unicycle. His first try is not good; he manages just two rotations of the pedals before falling off. This difficult action of unicycling has, however, resulted in different cells throughout the brain firing, which leads to a kind of circuit of neurons activating together.
He then decides to have a go the next day. Again, this network of neurons fire together and this time, connect a bit more strongly. After this he then decides that he will train in unicycling and does it for an hour each day. By doing this, he strengthens his neuronal network every single time.
How is this man’s unicycling relevant to Huntington’s?
- An increasing number of studies have shown that an ‘engaged lifestyle’ - one that includes different activities that exercise the brain - has considerable long-term benefits.
- The fun part is that ‘engaged lifestyle’ refers to anything that uses the brain, from unicycling to seeing a new film, playing XBox, travelling, having a good laugh with a friend, doing a new dance class - the list goes on.
- Every time you do something that activates your brain, you are training it to be stronger. There is a connection between how we engage our brains now and the strength of our brains in the future.
- Knowing this can empower us to make changes to our lives today that will help us later on down the track.
Exercise and physiotherapy
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.
Currently research is underway in Europe and the U.S.A, with people with early-mid stage Huntington’s, to determine the possible benefits of various types of physiotherapy-led exercise programs.
Physiotherapists are trained in understanding the effects of movement disorders such as Huntington’s. They can help you to understand the potential physical motor symptoms and progression of the disease, and can prescribe exercises and activities that are appropriate for your own specific needs.
The Physiotherapy Working Group of the European Huntington’s Disease Network (EHDN) has made the following recommendations for people who are at risk of Huntington’s, or at the early stages of the disease:
- See a qualified physiotherapist who can provide advice on physical activity and potentially help with difficulties related to posture and muscles. Your GP can refer you.
- Participate in a regular exercise routine (see recommendations below). Structure your day to encourage ongoing physical and mental activity (e.g. daily stair climbing, walking to work, playing cards, doing puzzles)
Basic guidelines for a recommended fitness programme:
- Trunk mobility and flexibility exercises (e.g. yoga, pilates exercises)
- Endurance/cardiovascular training (recommended 30 minutes three to five times a week; e.g. walking, swimming, cycling training on a stationary bike)
- Balance exercises
- Strength training/core stability
If you have any questions, you can contact members of the Physiotherapy Working Group of the European Huntington’s Disease Network, who are specialist experts in physiotherapy for people with Huntington’s disease.
Insurance and legal matters
Any serious health condition or disability can affect you in terms of certain types of insurance, so it makes sense to find out the facts and make sure you are adequately covered. There are also legal matters to consider if you have Huntington’s disease or are caring for someone who has it.
Insurance
The insurance industry is based on risk. It aims to offer a fair service based on the risk level of any applicant. The amount you pay for insurance is affected by many factors such as your age, whether you smoke and any other known risk factors, including your family history.
When applying for insurance, all questions need to be answered honestly, otherwise a claim will not be valid in the future. While insurers do ask about family history, there are rules in relation to asking about genetics.
In 2019 the Association of British Insurers issued a new code which insurance companies have to follow in relation to genetics and insurance.
The key obligations of insurance companies during the moratorium are that no insurer will request an applicant to take a genetic test in order to take out insurance and, in relation to Huntington’s disease, they can only ask for a test result if you are applying for:
- Life insurance in excess of £500,000
- Critical illness in excess of £300,000
- Income protection in excess of £30,000 per annum.
Very few people wish to take out insurance at these high rates.
This means that people who have a family history of Huntington’s are likely to have to pay higher premiums than someone who doesn’t. If someone has a positive test, the rates will continue to be high but if they have a negative test they will be able to take out a new policy and benefit from the lower premiums. If you have had the test you do not have to tell your insurers this – they only need to know your situation when you took out the policy.
In relation to mortgages, while some providers may recommend that people take out life cover when taking out a mortgage, this is not usually a compulsory requirement.
Travel insurance
If you have a heath condition or a disability – a ‘pre-existing condition’ – you need to take particular care when shopping around for travel insurance.
If you don’t tell your insurers about having Huntington’s when asked if you have any ‘pre-existing condition’, your insurance could be invalid.
You should also check that the policy covers any equipment you need to take with you.
More information on this issue and other aspects of purchasing insurance if you are ill or disabled is available from the Money Advice Service.
Legal matters and power of attorney
One day it may not be possible to manage your own financial or welfare matters without help from someone else.
If you have Huntington’s and are beginning to find it difficult to manage your financial or legal affairs you can appoint someone you trust to help you. For example, for benefits help you could ask the relevant benefit department to let you have a named person act as your ‘appointee’. This person will then liaise with that department on your behalf.
If you are able to manage things for now, you may still want to put something in place for the future, so that someone you trust can make certain decisions for you. This is called granting Lasting Power of Attorney (LPA).
There are two types of LPA – Power of Attorney for Property and Financial Affairs and Power of Attorney for Health and Welfare. The government guide on how to set these up is available here.
- Power of Attorney for Property and Financial Affairs
If you want to, you can ask someone to start taking over your property and financial affairs while you still have capacity. They can then continue to use this power to manage your affairs, should you be unable to in future. - Power of Attorney for Health and Welfare
This is only used if someone has lost capacity to manage their own health and welfare. It enables someone to make decisions affecting your care, for example about different kinds of treatments you might have, or whether you might need residential care.
The Office of the Public Guardian (OPG) protects people in England and Wales who may not have the mental capacity to make certain decisions for themselves, such as about their health and finance and you can find out more about this here.
