Frequently Asked Questions
FAQ: General Questions
Welcome to the Frequently Asked Questions section directed at answering General Questions – these are designed to help you to better understand some of the problems associated with children and adults with Down's Syndrome.
Please click here for our Frequently Asked Questions section for Nutritional Intervention for Children with Down's Syndrome (NICDS)
Please click here for our Frequently Asked Questions section for finding support and guidance.
What is Down's Syndrome?
Dr. J. Landon Down delivered a lecture to the Medical Society of London in 1887 where he described some of the Mental Affections of Childhood and Youth and he described the medical and developmental conditions which became a Medical Diagnosis called Down's syndrome. "Down" was the Doctors name. Nothing to do with Up or Down.
In 1959 Professor Jerome Lejeune discovered the presence of third copy of chromosome 21 in these patients. This extra chromosome provides around 300 extra genes to the normal compliment of 60,000 genes in every cell in the body and the brain.
- 92% of Down’s syndrome births are called Trisomy 21
- 4% of Down’s syndrome births are called Translocation
- 2% of Down’s syndrome births are called Mosaic
How many babies are born in the UK with Down’s Syndrome each year?
There are about 700 babies born each year in the UK, this means that approximately one baby per 1,000 births are born with Down's syndrome. Although the likelihood of having a baby with Down's Syndrome increases with age it should be noted that about 80% of births are to women under the age of 40 years.
Is there a medical test which will prove that my baby definitely has Down’s Syndrome?
Yes, shortly after birth a blood sample is taken and this will show if there is chromosome 21 present.
Is there a cure?
Down’s syndrome is not a disease and there is no cure, but treatment of any associated health problems and support for learning difficulties allows many people with Down’s syndrome to lead normal and semi-independent lives. Others however, may need higher levels of care and support.
Physiotherapy, speech therapy and special educational programmes have an important role to play, while specific medical conditions associated with Down’s syndrome are treated appropriately.
With advances in medical knowledge and our growing awareness of healthy lifestyles, people with Down’s syndrome may live well into adulthood, with an average life expectancy of around 60 years.
What are the medical conditions commonly associated with Down’s Syndrome?
There are some medical conditions which are associated with Down's syndrome, but they are not unique restricted only to people with Down’s syndrome.
The medical conditions & disabilities which commonly affect people with Down’s syndrome are:
- Learning Disability - all children have some level of learning disability
- Heart disease
- Stomach and bowel problems
- Alzheimer and dementia - a high proportion of people with Down’s syndrome will have early on-set Alzheimer or dementia.
- Hearing and sight problems
- Problems with the Immune system
- Speech and hearing problems
It should be noted that not all children with Down’s syndrome will have all these medical conditions & disabilities and many children grow up to lead healthy lives.
What level of learning disability will my child have?
All people with Down’s syndrome will have some degree of learning disability, but the level of that disability will vary from person to person. Your child will learn but they will be slower in developing normal skills than other children. However there is a lot of support available which will enable your child to reach their full potential. What is important is that like any other child you treat them as a normal member of the family you involve them in family life, and acknowledge their successes. It is also important that you enrol them in early intervention schemes which are designed to help you to develop your child’s skills but at a slower pace.
Why should I support research undertaken by your charity when research is already being undertaken?
Whilst our research is specifically aimed at medical conditions & disabilities which predominantly affect people with Down’s syndrome that is: learning difficulties, early onset Alzheimer’s/dementia, heart disease, diabetes, obesity, leukaemia, the benefit of our research is that this is a unique group of people who are at high risk of these conditions so it is easier for the research to be targeted, whilst the results will benefit the wider community.
We will not be reinventing the wheel – we will be using previous research as a starting point for any further research. So if there is already research which has been undertaken we will continue from there.
We aim to work in association with other Charities in order to maximise our research capabilities e.g. Nutritional Interventions in Children with Down’s Syndrome is in association with the Mother & Child Foundation.
Are you a support group?
Yes, however not in the social group sense although we do have a Facebook social group where we share stories, encouragement and relevant news for and from our members. We offer support as we are a charity set up by parents of children with Down's syndrome to commission nutritional and medical research to slow down and potentially delay the onset of the many serious health conditions associated with Down’s syndrome. Our aim is to help improve the quality of life for the many children and adults who have Down's syndrome – and those who will be born in the future.
We publish and share our findings on-line and organize conferences as new discoveries are made through research to inform and update parents, carers, medical organisations and individuals and other appropriate groups. In addition we have published a brochure called Bright Beginnings we distribute to hospitals, birthing centres, parents and any intersted group or party. Our conferences, in addition to other very educational videos, are posted on our web site and can be found in the video library. A downloadable copy of our Bright Beginnings brochure is also available in our Parents section.
In addition to the research, publication, conferences, and videos we produce we also direct parents to helpful resource when applicable.
How are you funded?
We receive no Government funding and rely totally on voluntary donations from individuals, companies, community groups and grant making trusts and foundations. Our need to fundraise and generate income is constant and we appeal to you to support us if you possibly can. Regardless of how small the donation - every little really does help, especially on a regular monthly basis. Please refer to our ‘Support Us’ page to find out about the various ways you or your friends can help us raise these vital funds.