26 or fewer
Negative
Will not develop Huntington’s disease.
Understanding Huntington's
What is Huntington’s disease?
Huntington’s disease (HD) is an inherited condition that affects the brain and gradually changes the way a person moves, thinks and behaves.
It is caused by a change in a single gene. If a parent has the Huntington’s gene, each of their children has a 50% chance of inheriting it.
HD affects everyone differently. Symptoms usually develop gradually and can include involuntary movements, changes in balance and coordination, difficulties with speech and swallowing, changes in thinking and concentration, and changes in mood or behaviour.
There is currently no cure for Huntington’s disease, but treatments, specialist care and support can help manage symptoms and maintain quality of life.
Huntington’s doesn’t only affect the person with the disease. Its impact can reach across entire families and generations.
THE HUNTINGTON'S RIPPLE EFFECT
Huntington's disease doesn't just affect the person who carries the altered gene. Its effects can spread through partners, children, carers, relatives, friends and generations yet to come.
↓ Tap or click each part of the ripple to explore who Huntington's can affect.
THE PERSON
WITH HD Living with the symptoms and effects of Huntington's disease.
WITH HD Living with the symptoms and effects of Huntington's disease.
Immediate Family
The diagnosis belongs to one person, but those closest to them often begin living with Huntington's too.
Partner or spouse
Watching someone they love change while adapting their own life,
relationship and plans for the future.
Children
Each biological child of a parent who carries the altered HD gene
has a 50% chance of inheriting it.
Parents
Worry, grief, caring responsibilities and sometimes questions about
where the altered gene came from within the family.
Brothers & sisters
They may be supporting their sibling while also facing questions about
their own genetic risk and that of their children.
The Partner's World
A boyfriend, girlfriend, husband, wife or partner may have no genetic risk themselves — but Huntington's can still have an enormous effect on their life.
Fear for the future
What will our lives look like in five, ten or twenty years?
Living with uncertainty
Their partner may be at 50% risk and may not want, or be ready,
to have a genetic test.
Love & commitment
Balancing an ordinary relationship with the knowledge that HD
may become part of their future together.
Having children
Should we have children? Should we test first? What options are available?
What is right for us?
Relationship changes
Symptoms can gradually change communication, responsibilities,
intimacy and everyday family life.
Emotional pressure
Anxiety, sadness, uncertainty and fear may exist long before anyone
develops symptoms.
The Child at 50% Risk
A child of a parent who carries the altered Huntington's gene has a 50% chance of inheriting it. That knowledge can influence major life decisions even when they are completely well.
Do I get tested?
Some people want to know. Others decide that knowing is not right
for them at that point in their life.
What if I test positive?
The result can affect thoughts about health, career, relationships,
finances and starting a family.
What if I test negative?
Relief can be enormous, while emotions may still be complicated
when brothers, sisters or other relatives remain at risk.
Relationships
When should I tell a partner? How will they feel? Does my genetic
risk change our plans together?
Planning ahead
Education, work, mortgages, insurance, finances and long-term
decisions may all feel different when the future is uncertain.
Starting a family
The possibility of passing HD to another generation can create
difficult and deeply personal decisions.
The Carer & Their World
A carer can be a husband, wife, partner, parent, child, sibling, relative or friend. Their life can change enormously as HD progresses.
Emotional toll
Love, worry, grief, responsibility and exhaustion can exist
alongside one another.
Physical demands
Day-to-day support may increase as movement, speech, eating and
independence become more difficult.
Changing relationship
A husband, wife, child or parent can gradually find themselves
becoming a full-time carer as well as a loved one.
Work & finances
Working hours may reduce or employment may stop altogether,
affecting income and future plans.
Isolation
Caring responsibilities can reduce time for friends, hobbies,
holidays and everyday social life.
The carer's family
Their own children, parents, brothers, sisters and friends can
also be affected by the demands of caring.
Starting a Family
Huntington's can influence decisions about having children long before a pregnancy begins.
Important:
If someone has a confirmed altered HD gene, each biological child has a 50% chance of inheriting it.
If someone has a 50% chance of carrying the gene but has not been tested, each pregnancy has an overall 25% chance of inheriting the altered gene (50% × 50% = 25%).
If someone has a confirmed altered HD gene, each biological child has a 50% chance of inheriting it.
If someone has a 50% chance of carrying the gene but has not been tested, each pregnancy has an overall 25% chance of inheriting the altered gene (50% × 50% = 25%).
Natural conception
Couples may choose to conceive naturally while understanding
the genetic risk involved.
Prenatal testing
Specialist genetic services can discuss testing during pregnancy
and the decisions that may follow.
IVF with PGT-M
Embryos can be tested for the family's Huntington's variant before
transfer, allowing embryos identified as not carrying that variant
to be considered for transfer.
The emotional journey
Fertility treatment can involve appointments, procedures,
waiting, disappointment, hope and difficult decisions.
Choosing not to have children
Some people decide that biological parenthood is not the right
choice for them. That decision can carry its own emotions.
Every family is different
These choices are deeply personal. Genetic counselling and
specialist medical advice can help families understand their options.
The Wider Ripple
The ripple doesn't stop with the immediate family. Many other people can become part of life with Huntington's disease.
Grandchildren
Genetic risk and family experiences can reach into future generations.
Extended family
Aunts, uncles, cousins, nieces and nephews may worry, support,
care or face genetic questions themselves.
Friends
Friends may witness the journey, provide support and watch someone
they care about change.
Employers
Changes in health or caring responsibilities can affect working
hours, flexibility and employment.
Schools & education
Children and young people living in an HD family may need
understanding and support.
Healthcare teams
GPs, neurologists, nurses, therapists, genetic counsellors and
other specialists may all become involved.
Social care
Care packages, respite, adaptations and practical support may
become part of family life.
Support organisations
Charities, support groups and local communities can provide
information, understanding and connection.
ONE ALTERED GENE. ONE FAMILY.
A RIPPLE THAT CAN REACH THROUGH GENERATIONS.
A RIPPLE THAT CAN REACH THROUGH GENERATIONS.
Common Questions About Huntington's Disease
How is Huntington's disease inherited?
Huntington’s disease is caused by a change in a gene that can be passed from parent to child.
If a parent carries the Huntington’s gene, each child has a 50% chance of inheriting it.
That chance is the same for every pregnancy. Having one child who inherits the gene does not change the chances for another child.
A person who does not inherit the altered Huntington’s gene cannot pass it on to their children.
This is why Huntington’s disease can affect generation after generation of the same family.
One gene can affect an entire family tree.
The genetic change that causes Huntington’s disease is called a CAG repeat expansion. A genetic blood test counts how many times the CAG sequence repeats within the HTT gene. This repeat number helps show whether someone will develop Huntington’s disease.
What does your CAG repeat number mean?
CAG stands for cytosine, adenine and guanine — three chemical letters found in DNA.
Everyone has an HTT gene, which provides the instructions for making a protein called huntingtin. Within the gene is a repeated CAG sequence. Huntington’s disease is caused when this sequence repeats too many times.
27–35
Intermediate
Will not develop Huntington’s disease, but there is a very small chance the repeat could expand when passed to a child.
36–39
Reduced penetrance
May develop Huntington’s disease, but not everyone does.
40 or more
Full penetrance
Will develop Huntington’s disease at some point.
Source: Huntington’s Disease Association
How does Huntington's disease affect someone?
Huntington’s disease affects the brain, but its symptoms can appear in many different ways.
The disease can gradually affect movement, thinking and behaviour, and no two people will experience Huntington’s in exactly the same way.
Some changes may be noticeable early, while others develop slowly over many years.
As Huntington’s progresses, everyday things many of us take for granted, walking, speaking, eating, making decisions and communicating, can become increasingly difficult.
Huntington’s isn’t just a movement disorder. It can affect almost every part of a person’s life.
MOVEMENT
Huntington’s can cause involuntary movements, often called chorea, as well as problems with balance, coordination and walking.
As the disease progresses, speaking, swallowing and everyday physical tasks can also become more difficult.
THINKING
HD can affect concentration, memory, planning and decision-making.
Processing information may become slower, and tasks that were once straightforward can become increasingly difficult.
BEHAVIOUR & EMOTIONS
Changes in mood, motivation, behaviour and personality can be part of Huntington’s disease.
Depression, anxiety, irritability, apathy and difficulty controlling emotions can all occur.
"I'm not drunk. I have Huntington's disease."
Huntington’s disease can affect a person’s balance, coordination, movement and speech. To somebody who doesn’t understand the condition, these symptoms may look like drunkenness. People living with HD can find themselves stared at, laughed at or judged while simply trying to go about their day. Before you stare, whisper or make a comment, please pause, the person in front of you may be living with a neurological condition that already makes everyday life difficult enough. A little understanding can make an enormous difference.
How does Huntington's disease progress?
Huntington’s disease is progressive, which means symptoms gradually change and become more difficult over time.
The speed of progression is different for everyone. Some people may live with relatively mild symptoms for many years, while others may experience changes more quickly.
As the disease progresses, a person may need increasing help with everyday activities such as walking, washing, dressing, eating and communicating.
In the later stages, swallowing can become particularly difficult and specialist support may be needed to help manage nutrition, communication and comfort.
There is no fixed timetable for Huntington’s disease. Every person and every family experiences it differently.
Understanding your options
When Swallowing Becomes Difficult
In the later stages of Huntington’s disease, families may face an extremely difficult decision: whether to use a feeding tube or continue eating and drinking by mouth with the risks acknowledged.
A few words from me
This is one of the cruellest and hardest decisions Huntington’s can force a family to face. After speaking with professionals and considering Sarah’s own wishes, we decided that she would continue eating and drinking by mouth. Every sip and every spoonful frightens me because I know the risks, but Sarah still needs to eat and drink—and there is no completely safe or easy answer.
I am not a medical professional and this section is not intended as advice. I am simply sharing the decision we made, what we considered and what living with that decision really feels like. There is no right or wrong choice; I only hope our experience helps another family feel less alone when having these difficult conversations.
Our Experience: The Hardest Decision
A short extract from our family’s film about the decision we faced for Sarah.
PEG feeding
A PEG is a tube placed through the abdomen into the stomach so liquid nutrition, water and many medicines can be given without swallowing them by mouth.
✓What it may help with
- Providing nutrition and hydration
- Giving many medicines more easily
- Helping to maintain weight
- Reducing the pressure and effort involved in eating
- Allowing small amounts by mouth in some cases, if the care team advises this is appropriate
!Things to consider
- It requires a medical procedure and ongoing tube care
- Infection, leakage, discomfort, blockage or displacement can occur
- It does not stop Huntington’s disease from progressing
- It does not remove every risk of aspiration or chest infection
- The effect on comfort, daily life and the person’s wishes must be considered
The illustration shows examples of commonly used feeding equipment. The device and feeding arrangement provided will vary from person to person.
Continuing by mouth
This is professionally known as eating and drinking with acknowledged risks, although many families will recognise the term “risk feeding”.
✓What it may preserve
- The taste, pleasure and familiarity of food and drink
- The social and emotional experience of sharing food
- A familiar daily routine
- The person’s previously expressed wishes
- A focus on comfort and quality of life
!Things to consider
- There remains a risk of choking and aspiration
- Food or drink entering the lungs may cause chest infections
- Maintaining weight and hydration can become increasingly difficult
- Meals may take longer and can be tiring or stressful
- The responsibility and fear can be extremely difficult for family carers
There is no single right choice
Every person, family and stage of Huntington’s disease is different. The person’s wishes,
comfort, quality of life and individual medical circumstances all matter.
Professional information and support
Decisions about swallowing and nutrition should be discussed with the person’s neurologist, GP, Speech and Language Therapist, dietitian and wider care team. The Huntington’s Disease Association provides specialist information to help families understand the options.
This section shares one family’s lived experience and general information only. It is not a substitute for individual medical advice. Never change someone’s food, drink consistency, feeding method or care plan without guidance from the professionals involved in their care.
Is there a cure for Huntington's disease?
At the moment, there is no cure for Huntington’s disease and there is no treatment that can stop or reverse the condition.
However, that does not mean there is nothing that can be done.
Medication can help manage some symptoms, while physiotherapy, speech and language therapy, dietetic support, mental health support and specialist Huntington’s care can all help maintain quality of life.
Research into Huntington’s disease continues around the world, including work looking at treatments that target the genetic cause of the disease.
There may not yet be a cure, but treatment, care and support can make a real difference.
What if Huntington's disease is in my family?
Finding out that Huntington’s disease is in your family can bring many questions, not only about the person who has been diagnosed, but about what it could mean for you, your children and future generations.
If one of your parents carries the Huntington’s gene, you have a 50% chance of inheriting it. But being at risk does not mean you have to be tested.
Predictive genetic testing is a personal decision. In the UK, testing is normally carried out through a specialist genetics or Huntington’s disease service, with counselling and appointments beforehand so that you understand what knowing your result could mean.
Whether you choose to be tested or not, information and support are available.
You don’t have to make these decisions alone.