1981-1993 Expand In 1981, a vision for a more inclusive world for people with Down syndrome was ignited in Mexico City. Sylvia Escamilla, the founder and president of Fundación John Langdon Down, organized the first World Down Syndrome Congress, bringing together representatives from more than 25 countries. The Congress was a groundbreaking event, providing a platform for people with Down syndrome, their families, and advocates to share their stories, learn from each other, and develop strategies for promoting inclusion and full participation in society. Speakers at the Congress included Dr. Pueshel, Professor Jérôme Lejeune, and Dr. Smith, leading experts on Down syndrome at the time. Their insights and perspectives helped to shape the understanding of Down syndrome and inform the work of advocates around the world. The success of the first World Down Syndrome Congress inspired the organizers to establish an international network to support organizations working to improve the lives of people with Down syndrome. Jo Mills (Canada), Penny Robertson (Australia), and Sylvia Escamilla (Mexico) began work on forming the constitution of this new organization, later joined by representatives from Europe and Asia. In 1993, Down Syndrome International (DSi) was founded, marking a new era of global collaboration and advocacy for people with Down syndrome. A Legacy of Inspiration The first World Down Syndrome Congress was a watershed moment in the history of the Down syndrome community. It was a gathering of minds and hearts, united in a common goal: to create a better world for people with Down syndrome. The vision ignited at that first Congress has continued to burn brightly over the years. Thanks to the tireless efforts of advocates around the world, people with Down syndrome are now living more fulfilling and inclusive lives than ever before. But the work is not done. DSi and its partners continue to fight for the rights and inclusion of people with Down syndrome in all aspects of society. Together, we can create a world where everyone belongs.
2002 Expand In May 2002, DSi became a UK charity, officially recognized by the Charity Commission of England and Wales. As a UK charity, DSi was able to tap into the resources and generosity of the British people to support its work in the UK and beyond.
2006 Expand On December 13, 2006, history was made. At the United Nations Headquarters in New York, the Convention on the Rights of Persons with Disabilities (CRPD) was adopted. This landmark treaty recognizes and protects the human rights of people with disabilities, and it has had a profound impact on the lives of millions of people around the world. Down Syndrome International (DSi) played a vital role in the development of the CRPD. DSi Trustees Penny Robertson and Dan Weeks represented the organization at the UN negotiations, and they worked tirelessly to ensure that the voices of people with Down syndrome were heard. The CRPD was opened for signature on March 30, 2007, and it was met with an unprecedented response. On its opening day, the Convention was signed by 82 countries and 44 countries signed the Optional Protocol. This was the highest number of signatories in history for a UN Convention on its opening day. The CRPD entered into force on May 3, 2008, and it has since been ratified by over 180 countries. The Convention has had a transformative impact on the lives of people with disabilities, and it has helped to create a more inclusive world for everyone. Here are some of the key achievements of the CRPD: It has helped to raise awareness of the rights of people with disabilities and to challenge discrimination. It has led to the development of new laws and policies that promote the inclusion of people with disabilities in all aspects of society. It has helped to improve access to education, employment, healthcare, and other essential services for people with disabilities. It has empowered people with disabilities to advocate for their own rights and to participate fully in society. The CRPD is a living document, and it continues to evolve as we learn more about the needs and rights of people with disabilities. DSi remains committed to working with governments, organizations, and individuals to ensure that the CRPD is fully implemented and that all people with Down syndrome have the opportunity to live full and meaningful lives. A World Where Everyone Belongs The CRPD is a beacon of hope for people with disabilities around the world. It is a testament to the power of international cooperation and to the belief that everyone deserves to live with dignity and respect.
2007-2009 Expand Our first outreach programme. In late 2007, BG Group Libya (BGL) reached out to DSi, seeking support for the Libyan Down Syndrome Association (LDSA), a fledgling non-governmental organization founded by parents of children with Down syndrome. Driven by a shared belief in the right of all people with Down syndrome to live fulfilling lives, DSi sent two Board members to Libya in May 2008 to conduct an initial needs assessment. Their findings paved the way for a second visit in early 2009 by a team of five DSi specialists. The team initially delivered workshops on a range of topics, but after feedback from LDSA and extensive discussions with all stakeholders, they tailored their presentations to meet the specific needs of the Libyan audience. Upon their return, the DSi team compiled a detailed report outlining key recommendations for LDSA. The report sought to build on the LDSA's existing foundation and help it develop into a robust and knowledgeable organization that could provide sound advice and assistance to people with Down syndrome, their families, and all others in Libya with an interest in Down syndrome. The DSi team's visit to Libya was a watershed moment for the LDSA and the Down syndrome community in the country. It planted a seed of hope, inspiring Libyans to work together to create a more inclusive world for people with Down syndrome. 10th World Down Syndrome Congress In August 2009, the 10th World Down Syndrome Congress was hosted in Dublin, Ireland. The theme of the Congress, "Lifelong Living and Learning," reflected DSi's commitment to supporting people with Down syndrome to live fulfilling lives at every stage of their development. One of the highlights of the Congress was a keynote address by Dr. Maria Montessori, the renowned Italian educator who developed the Montessori teaching method. Dr. Montessori spoke about the importance of creating inclusive learning environments where all children, regardless of their abilities, can thrive. Another memorable moment from the Congress was a performance by the Down Syndrome International Choir, a group of talented singers from around the world. The choir's performance was a moving testament to the power of music to bring people together and to celebrate the unique gifts of each individual. A new 'home' for DSi. In November 2009, DSi moved to new offices in Teddington, England. The building was once the home of Dr. John Langdon Down, the pioneering Victorian physician who first identified Down syndrome in 1862.
2010 Expand Members of the DSi board accompanied Maria Alejandra Villanueva, a self-advocate from Peru, to the Conference of State Parties to the Convention (COSP). Maria's right to vote has been withdrawn by the authorities. Maria said she was speaking on behalf of all people without the right to participate in national political life, describing herself as one of the thousands of Peruvians excluded from electoral lists and denied the right to vote. “I want to fight to change this — for me and other persons with disabilities. I want to be considered a citizen.” LEARN MORE
2011 Expand In December the United Nations General Assembly declared 21 March as World Down Syndrome Day (WDSD), a resolution proposed and promoted by Brazil, following a request by the Brazilian Federation of Associations of Down Syndrome, who worked with DSi and our members to launch an extensive campaign to generate international support. Visit the official World Down Syndrome Day website: World Down Syndrome Day
2012 Expand In March we organised the first WDSD Conference at United Nations HQ in New York, United States. 2012 conference theme “Building Our Future” In August, we were in Cape Town, South Africa for the 11th World Down Syndrome Congress.
2013 Expand In March we organised the 2nd WDSD Conference at United Nations HQ in New York, United States. 2013 conference theme “Right to Work” In April we visited Tajikistan to deliver education training. TAJIKISTAN EARLY DEVELOPMENT
2014 Expand In March we organised the 3rd WDSD Conference at United Nations HQ in New York, United States. 2014 conference theme “Health and Wellbeing –Access and Equality for All” In October we visited Oman to deliver healthcare training. OMAN HEALTH TRAINING
2015 Expand In March we organised the 4th WDSD Conference at United Nations HQ in New York, United States. 2015 conference theme "My Opportunities, My Choices" – Enjoying Full and Equal Rights and the Role of Families In August we were in Chennai, India for the 12th World Down Syndrome Congress.
2016 Expand In March we organised the 5th WDSD Conference at United Nations HQ in New York, United States. 2016 conference theme “My Friends, My Community” – The benefits of inclusive environments for today's children and tomorrow's adults DSi supported the establishment of Rwanda Down Syndrome Organisation. RWANDA ORGANISATION SUPPORT
2017 Expand In March we organised the 6th WDSD Conference at United Nations HQ in New York, United States. 2017 conference theme "My Voice My Community" – Enabling people with Down syndrome to speak up, be heard and influence government policy and action, to be fully included in the community Also in March we organised the first WDSD event at United Nations in Geneva. We visited Turkey to deliver our first self-advocacy training. TURKEY SELF-ADVOCACY We worked with Sociedad Peruana de Sindrome Down in Peru to deliver our parent support project. PERU PARENT SUPPORT
Mental health Expand Discussion about mental health tends to focus on mental health conditions, rather than what constitutes good mental health. According to the World Health Organisation (WHO), mental health is a ‘state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully and is able to make a contribution to his or her community’. Many people with Down syndrome experience positive mental wellbeing and do not exhibit signs of poor mental health. However, there are certain factors that may make people with Down syndrome more susceptible to poorer mental health. Certain biological differences, as well as everyday stresses that people with Down syndrome may find harder to deal with, may make people with the condition more susceptible to mood, emotional and other mental health problems. People with Down syndrome often find life changes difficult to deal with. Being aware that this can be an issue and preparing and informing the person with Down syndrome in advance of change may lessen stress levels and prevent problems. Sometimes a behavioural change may be an attempt to communicate physical or psychological discomfort. For example, there is evidence to suggest that many people with Down syndrome have a delayed response to bereavement and grief. As people with Down syndrome may struggle to verbally express the pain or illness they are experiencing, they may feel upset, anxious or have low moods. If low moods persist or if symptoms of depression develop it is important to seek specialist advice. Depression is not part of the condition but is one of the most frequently diagnosed psychiatric disorders for people with Down syndrome. Poor mental health is not inevitable for people with Down syndrome. However, mental health conditions in people with Down syndrome may still be overlooked because of ‘diagnostic overshadowing’, i.e. the assumption that their behaviour is caused because they have Down syndrome.
Depression Expand Depression is at least as common in people with Down syndrome as it is in the general population and the effects are the same. Depression is not part of the condition but is one of the most frequently diagnosed psychiatric disorders for those with Down syndrome. It is much more than just feeling sad or low for a while. There is a wide range of symptoms, some more common than others, which persist for at least two weeks and often considerably longer. Depression may appear relatively quickly or may develop gradually over many months. Depression can occur as a result of an upheaval in a person's life such as bereavement, as a result of disappointment, stress or illness or sometimes for no apparent reason. Society in general is becoming increasingly aware of the occurrence and impact of mental illness and its treatment. So too are the families of people with Down syndrome who will no longer tolerate the ‘that’s just Down syndrome, what do you expect’ approach and are actively seeking to improve mental well-being by securing the diagnosis, treatment and programmes of support which are routinely available to the wider population. As for all people who experience depression, it is important to ask for help. It is not normal for someone to feel depressed just because they have Down syndrome. Remember to be patient and that depression is an illness, and that most people get better with treatment and support.
Bereavement Expand The loss of a loved one is one of life’s most stressful events. People with Down syndrome can be denied the opportunity to grieve because other people mistakenly assume that they don’t have the capacity to understand about death or to feel real sadness. As the life expectancy of people with Down syndrome is steadily increasing many more are experiencing the death of their friends and parents. When they are bereaved, their emotional and physical reactions to the loss are frequently misunderstood or denied. People respond to bereavement and express their grief in many different ways. Usually there is a process of working through their feelings, coming to terms with the loss and adjusting to life without their loved one. The grieving process for those with Down syndrome may however take longer and may show itself in ways that are not instantly recognisable. They will probably need help in working through the process. Many people with Down syndrome find change of any kind difficult to cope with. Routines can be particularly important to them by providing a sense of order and structure to their lives. As well as dealing with the grief of the loss of someone close to them they may also have to cope with significant change to their routines. They may feel that other people are making decisions that affect their lives without any warning, any element of personal choice or of personal control. Specialist advice should be sought if grief develops into persistent low moods, significant behavioural changes or other symptoms of depression.
Alzheimer's disease Expand Alzheimer’s disease causes dementia. It is the most common cause of dementia, accounting for about two-thirds of cases in older people. Alzheimer’s disease is a very specific form of dementia and its symptoms include impaired thought, impaired speech, and confusion. Alzheimer’s disease gets worse over time, but the speed of change varies from person to person. The risk that a person with Down syndrome will develop Alzheimer’s disease increases with age at a similar rate as it does in the general population, but 30 to 40 years sooner than is the case for people without Down syndrome. It can be difficult to detect its onset and early course; in people with Down syndrome it may affect their personality first before the more classical early features of memory loss become obviously apparent. It is the person with Down syndrome, their family or carers who will first notice any changes. This should trigger an assessment, initially by the GP and, if necessary, through a referral to a local specialist service. The diagnosis of dementia and specifically of Alzheimer’s disease depends on the following: Evidence of a pattern of change in personality and general functioning that is characteristic of dementia, such as evidence of a deterioration in memory, general mental functioning, living skills, and personality. The exclusion, through a detailed history, clinical examination, and the undertaking of appropriate investigations, of other causes of dementia or of other disorders that might mimic dementia.
Sexual health Expand “Sexual health is a state of physical, mental and social well-being in relation to sexuality. It requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence”. (World Health Organisation definition). It is important that parents and carers are able to access support for their child or young person and to be aware that there are many professionals who are able to support them and their child from childhood through adolescence and into adulthood. Puberty and sexual health is an area of their child’s development that should be thought about, discussed and planned for. It is best if this is done in advance and support should continue throughout their adult life. It is important that vulnerable children, young people and adults are protected but this should not be at the cost of respecting their human need to love and to be loved, to have friends and to express their sexuality (in ways that suit them and which are acceptable). People with a learning disability have a right to express emotions and sexuality and develop relationships as an important part of a full and equal life based on a right to independence, control and life choices. Young people and adults with a learning disability have a right: To fulfilling personal and sexual relationships. To marry or cohabit. To make an informed choice about whether or not to have children. To take risks and make mistakes in personal relationships. To privacy and to be free from exploitation. To receive sex education, including counselling on personal relationships, sex and sexuality, contraceptive advice and sexual health support services. Talking about sex can be difficult and daunting. There may be many reasons why you are worried about answering questions or bringing up sex in conversation. You may be concerned about vulnerability and the need for careful support. However, the physical, social and emotional needs of teenagers and adults with Down syndrome will be the same as for others in their age group and they may have a lot of questions for you.
Ears and hearing Expand The majority of individuals with Down syndrome will have had otitis media with effusion (glue ear) in childhoodwhich may have required treatment with ventilation tubes (grommets). In many the glue ear issues resolves in their adolescent years however in a small proportion of individuals resultant perforations of the ear drums may persist. The ears of individuals with Down syndrome should be examined at the yearly health check for the evidence of perforations. As a result of narrow external auditory canals which are associated with Down syndrome, wax accumulation can obstruct the ear canal. Regular dewaxing in the GP practice can keep the canal open. Increased sensitivity to sounds Hyperacusis is an increased sensitivity to sounds. It means that individuals may feel pain or discomfort when they hear sounds that most people are able to tolerate. Hyperacusis is more prevalent in individuals with Down syndrome. It may affect individuals in different ways, for example refusal to go to large indoor areas e.g. shopping centres, or hyperacusis to certain sounds, for instance rattle of cutlery. If suspected, a referral to a specialist in audiological medicine or local audiology department is recommended. Early onset hearing loss Early onset age-related hearing loss (early onset presbycusis) is common in individuals with Down syndrome and easily overlooked. The hearing loss may start in early adulthood. A yearly hearing assessment will detect the onset of the hearing loss. Consideration should be given to provision of hearing aids when the hearing thresholds are significant enough to disrupt daily activity, for example repeated requests to turn up the volume on the TV, radio or personal audio devices or difficulty to hear in the presence of background noise.
Epilepsy Expand In Down syndrome epilepsy has two peaks of onset, the first is the development of epilepsy in infancy and the second is associated with the onset of dementia. Epilepsy in Infancy Epileptic spasms (sometimes called infantile spasms, West Syndrome or Salaam Attacks) are uncommon epileptic seizures which can occur in infants with Down syndrome. They also occur in infants without Down syndrome, occurring in less than one in every 2000 infants. They are more likely to occur in children who have some difficulties with their development. Epileptic spasms occur in around 5% of children with Down syndrome, making them much more likely to occur than in other children. Epileptic spasms usually occur in children aged less than 12 months. They most often start between 3 and 6 months old. Families may notice that their child’s head will suddenly nod forwards. Sometimes the arms or legs will also quickly move and their child may become upset. The movements are very brief (lasting less than a second), but may occur in “clusters” where several of these movements occur close together. These clusters may happen after the child wakes from sleep. Epilepsy in Adulthood Over 80% of people with Down syndrome and dementia develop seizures and this may be the presenting symptom of the dementia. There may be a change in seizure frequency, pattern or severity associated with the dementia compared with their previous epilepsy characteristics.
Thyroid disorder Expand Thyroid problems are more common in children and adults with Down syndrome than in the general population. The thyroid gland can be underactive (hypothyroidism) or overactive (hyperthyroidism). People with Down syndrome usually tend to develop hypothyroidism but sometimes they can have hyperthyroidism although this is much less common. Hypothyroidism can be present from birth but this does not happen very often. It is more likely that people with Down syndrome will develop hypothyroidism as they get older. This usually happens as a result of autoimmunity (the body’s defence system attacks itself, this is sometimes also called Hashimoto’s hypothyroidism) although there can be other causes. People with Down syndrome need regular screening blood tests throughout their lives. Babies born with Down syndrome should have a routine blood spot test in the first six weeks of life followed by a screening blood test when they reach their first birthday. Children with Down syndrome should have a screening blood test at least every two years.
Sleep problems Expand Sleep problems are common in children with Down syndrome and are often overlooked. These can be behavioural or physical in nature (related to sleep disordered breathing) or a combination. Bed time routines, consistent bedtime and waking times, going to bed when tired, falling asleep without parents, avoiding excitement near bedtime are some of the things that help to lessen the likelihood of behavioural sleep problems. Sleep disordered breathing, also experienced by adults with Down syndrome, is characterised by repeated pauses in breathing during sleep (sometimes referred to as sleep apnoea). Poor sleep can lead to daytime sleepiness, impaired daytime function, mood disturbances and irritability. Behavioural problems may also develop. Sleep problems should be investigated by a specialist to exclude underlying causes.
Eyesight Expand Issues with eyesight may affect children and adults with Down syndrome. As for everyone of all ages it is important to have regular sight tests. Eyesight in children with Down syndrome The eye problems which may affect children with Down syndrome are commonly those which occur in any group of children – they just tend to occur more frequently and sometimes to a more marked degree, therefore it is especially important to have their eyes checked. The treatment of children with Down syndrome usually differs very little from that of other children. Because of their learning difficulties children with Down syndrome sometimes need vision tests designed for younger children. They may find it easier to sign rather than name pictures verbally. Children with a heart condition do not usually have a problem if they need eye surgery, but advice from the cardiologist should be sought. Eyesight in adults with Down syndrome The eye conditions that occur in adults with Down syndrome are not unique to the syndrome – all occur in the general population. However, some conditions are more common in Down syndrome, or occur at a younger age in Down syndrome.
Neck instability Expand Some people with Down syndrome have neck instability (or craniovertebral instability) and it is a subject that sometimes causes worry for parents and professionals alike. The joints at the top of the spine and at the base of the skull allow us to shake and nod our heads. In people with Down syndrome, the ligaments, tissue that connects one bone to another bone thus holding a joint together, are stretchier. So joints may be looser and more flexible which can lead to slippage of the vertebrae; these are the bones that surround and protect the spinal cord. Problems can develop if a vertebra slips too far and puts pressure on the nerves in the spinal cord. This can be a gradual process or it can happen if a person is jolted suddenly such as when a whiplash injury occurs. In people with Down syndrome, the most common place for this slippage to happen is at the first and second vertebrae of the neck (known as ‘atlanto-axial instability’). Similar problems can also occur between the base of the skull and the atlas vertebrae (known as ‘atlanto-occipital instability’) although this isn’t as common as atlanto-axial instability. These two conditions are collectively known as craniovertebral instability. Sudden dislocation of the neck (such as with whip-lash injury) probably occurs more commonly in people with Down syndrome than in the rest of the population although it must be stressed that it is still very rare. A doctor suspecting that craniovertebral instability may be present and causing problems in a person with Down syndrome will probably refer that person to either an orthopaedic surgeon or a spinal neurosurgeon.
Heart problems Expand Heart problems are very common in people with Down syndrome and may affect children and adults. Roughly half of babies born with the condition will have a heart defect but less than one in five have a serious problem. Where children have a heart problem, it may be a relatively mild condition or it may be a more serious complication that means the child will need surgery. It is important to identify any serious problems in the first two months of life because early treatment may be needed. The UK Down’s Syndrome Medical Interest Group (DSMIG) recommend that by 6 weeks of age a formal heart assessment including echocardiogram has been carried out which should identify nearly all serious problems. Regular medical reviews should be carried out throughout life. This will allow prompt diagnosis and management of previously undiagnosed cardiac disorders or new problems having developed. We have collaborated with an international team of cardiologists (heart experts) to write a review of the recommended treatment of cardiovascular (heart) conditions in people with Down syndrome. We are delighted that the review has been published in the top cardiology journal worldwide, Circulation! You can read the full article in the Circulation journal: CIRCULATION