Frequently Asked Questions

Here a few of the questions we’re asked the most, if you have something to ask that’s not answered here, don’t hesitate to get in touch.

What is Down's syndrome

The presence of an extra copy of chromosome 21 in a baby’s cells causes Down’s syndrome. This usually occurs because of a chance happening at the time of conception, which can either come from the mother or the father. It is still not known what causes the presence of an extra chromosome 21. Anyone of any race, class or nationality can have a child with Down’s syndrome.

Why is it called Down’s syndrome?

It is named after an English doctor John Langdon Down who, in 1866 published the first comprehensive description of the condition.

Can I catch Down’s syndrome?

No. Down’s syndrome is not a disease. You cannot catch it and people who have it are not ill and do not “suffer” from the condition.

Are there different types of Down’s syndrome?

Yes. There are three types of Down’s syndrome. They are:

Trisomy 21 – with this type all the cells have an extra chromosome 21. About 94% of people with Down’s syndrome have this type.

Translocation – this occurs when extra chromosome 21 material is attached to another chromosome. Around 4% of people with Down’s syndrome have this type.

Mosaic – in this case only some of the cells have an extra chromosome 21. About 2% of people with Down’s syndrome have this type.

How many people in the UK have Down’s syndrome?

There are approximately 40,000 people in the UK who have Down’s syndrome and around 1 in every 1000 babies born in the UK will have the condition.

What are people with Down’s syndrome like?

They are individuals like everyone else, all with different personalities, talents, tastes and experiences. People with Down’s syndrome go to school, have relationships, pursue interests, work and lead independent lives. There are certain physical characteristics that are more common in people who have Down’s syndrome but they will still more closely resemble their family members. Everyone with Down’s syndrome has a learning disability, which means it’ll take longer for them to process information and learn new skills and tasks. This does not mean that they will not learn, develop and achieve.

Can I access help before my child with Down’s syndrome is born?

Yes, you can. We are always happy to meet with expectant parents to discuss any questions you may have. We will also signpost you to services and resources that can help you on your journey.

How will Down’s syndrome affect my child’s development?

Your child is unique so they will develop in their own time. Children with Down’s syndrome may all have a third copy of chromosome 21 but each will walk, talk, eat, potty train and learn to live independently at different times. All children with Down’s syndrome experience some degree of learning disability and will make progress in most areas – in their own time.

What’s the life expectancy of a person with Down’s syndrome?

The average life expectancy for a person with Down’s syndrome today is between 50 and 60 years, although people can live into their seventies.

What are the characteristic strengths of people with Down’s syndrome?

Reading ability, gesture and mime, visual learning and social interaction are all characteristic strengths. When learning is tailored to these strengths then the potential of children with Down’s syndrome can be unlocked.

What is life like for people with Down’s syndrome?

With improved education, healthcare and support there are now more opportunities than ever before for people with Down’s syndrome to lead the lives they want to. Many adults with Down’s syndrome leave home, enjoy loving relationships, are active members of their community and have jobs. Others also win medals, gain qualifications and inspire others!

What health checks will my child with Down’s syndrome receive?

There are basic minimum health checks that babies and children with Down’s syndrome should receive. All new parents are provided with an insert for their Personal Child Health Record (PCHR). The insert contains growth charts specific to children with Down’s syndrome as well as a list of any additional checks that may be beneficial.

What is portage?

Portage is guidance on how you and your child can interact, experience and learn together through play. It is sometimes referred to as ‘inclusion’. A portage worker can offer help, advice, guidance and practical suggestions about how to enhance your child’s learning and understanding of the world and benefit them physically and mentally. We offer portage training for families. For more information, contact us or see our calendar for details.

How does physical activity benefit people with Down’s syndrome?

As with everyone who takes part in sport the benefits include health, fitness, friendships and the satisfaction that comes from learning a new skill. DSActive carried out research and found that, since joining one of their sessions 27% of participants had lost weight, 68% improved their fitness, 78% improved their physical ability and 91% improved their social skills. They also found evidence that social interactions, team work, non-verbal and verbal communications skills all improved.

What health conditions are most common in people with Down’s syndrome?

There are some conditions that are common with people who have Down’s syndrome although it is worth noting that not every person will experience them and many of these conditions also affect the general population. Heart problems, hearing and visual impairments can occur. Other common conditions can include thyroid function, immune system development, frequent coughs and colds and gastrointestinal conditions.

Will my child have heart problems because they have Down’s syndrome?

Around 50 per cent of babies with Down’s syndrome have heart problems that can be minor or more serious. Less than one in five have a serious heart problem.

Do people with Down’s syndrome have neck instability?

Sudden dislocation of the neck is very rare in people with Down’s syndrome although it is probably more common than with the rest of the general population. People with Down’s syndrome have stretchier ligaments so joints may be looser and more flexible which, in rare cases, can lead to slippage of the vertebrae. Some parents express concern about activities such as trampolining, gymnastics and horse riding for their child with Down’s syndrome. In many cases there is no reason why their child cannot take part in these activities, however all sports contain an element of risk for everyone! If you are concerned about neck instability it is advisable to ask a GP, paediatrician or chartered physiotherapist to carry out a screening test which has been developed by the British Gymnastics Association.

Is Coeliac disease more common in people with Down’s syndrome?

People with Down’s syndrome do have a higher chance of developing autoimmune conditions, of which Coeliac disease is one. Coeliac disease causes a person to have a bad reaction to gluten which is found in wheat, rye and barley. An assessment can be carried out by your GP and the disease can be controlled with a gluten-free diet.

Is it possible for someone to have Down’s Syndrome (DS) and Autism Spectrum Condition (ASC)?

Yes, a dual diagnosis of both DS and ASC is possible. Parents sometimes may find it difficult to get a dual diagnosis for their child because the combination of DS and ASC can mean that some of the common characteristics or traits may not be obvious.

Can people with Down’s syndrome lead healthy and active lives?

Absolutely. From an early age, children will benefit from making healthy food choices and being encouraged to take part in physical activity. There may be some factors that people with DS have to overcome when it comes to maintaining a healthy weight such as a lower metabolic rate and hormonal conditions. If you have any concerns regarding your child’s weight, it’s worth consulting your GP or learning disability nurse.

How can peer support events help my family?

Peer support events and days out are a chance for people with Down’s syndrome and their parents/ carers, siblings and grandparents to catch up with other families who have shared experiences to enjoy themselves together. Friendships grow through these events and families are able to enjoy experiences in a risk free environment. This means that if the day doesn’t go entirely to plan then there are supportive, like-minded individuals there to support one another. We find that these events are valuable for the whole family.

How can I help my child with Down’s syndrome to make friends?

Depending on your child’s own unique personality they could show you the way when it comes to making friends! However, not all children feel comfortable making new friendships and there are ways you can help. Providing opportunities for social interaction based on their likes and interests, providing choices about what they would like to do and who they would like to spend time with as well as modelling appropriate social behaviour will all help.

Will my child with Down’s syndrome struggle to make friends?

This very much depends on your child’s personality. Sometimes your son or daughter may find it very easy to make new friends, their peers will want to hang out with them and like them for who they are. Sometimes you might need to give them a little more support.

What can I do if my child doesn’t want to make friends?

Joining a group activity is not favoured by everyone! Try narrowing the field if your child feels overwhelmed in large groups and model social skills to them. For example show them how to take turns, share and greet others appropriately.

Is my teenager with Down’s syndrome eligible for an annual health check?

Every teenager with Down’s syndrome over the age of 14 is entitled to an annual health check. This Directed Enhanced Service (DES) has been introduced for all people with learning disabilities over the age of 14. Not every practice offers the service as the GPs are required to undertake specialist training but your practice should be able to provide you with a list of local doctors who provide the service if they do not. For more information about the annual heath check and to download the booklet visit the DSA website https://www.downs-syndrome.org.uk/for-families-and-carers/health-and-well-being/annual-health-checks/.

What does the future hold for my child with Down’s syndrome?

Generally, people with Down’s syndrome are living longer and achieving more than ever before. With the right support, people with Down’s syndrome are living independently, forming relationships, becoming role models and gaining employment.