of uganda(dosau)
TRANSCRIPT
UGANDA (DOSAUOF
MOTTO
HELP FOR CHILDREN BORN WITH DOWN SYNDROME
MISSION
Working as a coordinating, facilitating and enabling body of and for Individuals, Institutions, Organisations and groups of persons involved in helping children born with Down syndrome, PWDs and the families they live in, in Uganda as a charitable, non- profit making, non-denominational but a Voluntary Non- Governmental Organisation limited by guarantee
VISION
To develop a capacity to identify, take care and serve the people born with Down syndrome, PWDs, and the families they live in at all level.
AIM
Aims to bring together all people born with Down syndrome,PWDs who have got learning disability and impairment of some sort purposely to have a common voice on support, care and promoting their rights and equal opportunity.
WHAT IS DOWN SYNDROME? The word syndrome means a collection of signs or characteristics,
the name Down comes from doctor, John Langdon Down who first described the condition in 1866. There are more differences between people with Down syndrome than there are similarities, they will have of their families distinctive characteristics and will therefore resemble their brothers and sisters. As well as these individual characteristics however, they will have physical features shared by others with Down syndrome.
They will also have learning difficulties, this means they have greater difficulty learning than the majority of the people the same age. Down syndrome (also called Down syndrome) is a genetic condition known as trisomy 21, where a person inherits an extra copy of one chromosome 21, people with Down syndrome have three copies of chromosome 21 rather two. This additional genetic material changes the finely tuned balance of the body and results in characteristics physical and intellectual features.
Attitudes in society People with Down syndrome look little different and
are in general relatively less able than the population as a whole. It is important, however that the lives of all people have the same value and that they enjoy the rights. People react in different ways to those who have a learning difficulty, some avoid contact because of embarrassment, others are over protective, insisting on helping with things people can do themselves. Stereo typing and generalization such as “people with Down syndrome have lovely temperaments” but means that those people are not being treated as individuals. People born with Down syndrome in Uganda are neglected by their parents/relatives and the communities around because of the negative attitude, cultural beliefs most of which are suspected to guilty, for example in most Ugandan tribes producing a child with Down syndrome or physical disability is associated with witchcraft, sexual immorality, parents have not attended to the spirits of ancestors, a curse from God, hence calling for awareness intervention so that people’s attitude can change towards people born with Down syndrome and those with physical disability.
HOW DOES DOWN SYNDROME OCCUR?The frequency of Down Syndrome is
approximately for every 1,000 babies born, one will have Down syndrome. It occurs in families from all social, economic, cultural, religious and racial back grounds. Accurate figures for the number of people born with Down syndrome in the country or in different regions are not available; but it is only the last few years that the number of babies born with Down syndrome have been recorded by Down’s Syndrome Association of Uganda(Dosau).
CHARACTERISTIC
. English physician John Langdon Down first characterized Down syndrome as a distinct of mental disability in 1862 and in a more widely published report in 1866, due to his perception that children with Down syndrome shared physical facial similarities(epicanthal folds) with those of Blumenbach’s Monogolian race, Down used the , derived from prevailing enthnic theory. Attitudes to Down syndrome were very much tied to racism, colonialism and imperialism until as recently as the 1970s. By the 20s century, Down syndrome had become the most recognizable form of mental disability, most individuals with Down syndrome were institutionalized, few of the associated medical problems were treated, most died in infancy or early adult life.
The characteristic features of people born with Down syndrome were first described in 1866 by John Langdon Down, in 1959 Lejeune proved that Down syndrome is a genetic condition caused by the presence of an extra chromosome 21. The body consists of millions of cells which are too small to be seen with the naked eye; every cell consists a number of chromosomes, chromosomes are tiny particles which carry the blueprint for all the characteristics that we inherit.
Normally there are 46 chromosomes in every cell, half of these come from our mothers, half comes from our fathers. The person with Down syndrome has extra chromosome 21 making 47 in all, this results in a disruption to the growth of the developing baby.
This extra chromosome can come from either the mother or the father and is present because of a genetic accident when the egg or the sperm is made ( see diagram below) or during initial cell division following conception. (i.e when the egg and sperm fuse.
There are 3 different of Down syndrome 95% of people born with Down syndrome have the type known as standard trisomy 21, This type of Down syndrome is always an accident of nature, it can happen to anyone and there is no known reason why it occurs.
RISK AND MATERNAL AGEAGE The chance of having a baby
with down syndrome
25 Years old 1 in…. 1,400
30 Years old 1 in…. 800
35 Years old 1 in………380
38 Years old 1 in………190
40 Years 1 in……… 110
45 Years old 1 in ……… 30
THE CHANCE OF PARENTS
The majority of babies born with Down syndrome are still born to the young women, since the overall birth rate is higher in younger women.
The chance of parents of one child with Down syndrome having a second child with the condition can be greater than that of the general population. Genetic counseling is therefore very important.
FAULTY DISTRIBUTION OF CHROMOSOME 21 IN THE EGG LEADING TO STANDARD TRISOMY 21.
Sperm has 23 chromosomes
Eggs has 24 chromosome an
extra 21
47 47 First cell division
Fertilized egg 47 chromosomes (3 no 21’s)
47 47 47 47 Second cell division
FAULTY DISTRIBUTION CONT…Approximately 1 in 100 people born with
Down syndrome have inherited the condition from their mother or their father because of a genetic normally called a translocation.
The third type of Down syndrome also rare is known as Mosaic Down syndrome, again for reasons not understood the chance of any woman having a child born with Down syndrome increases with her age particularly after 35 years, the age of the father appears to be less significant.
DO CHILDREN WITH DOWN SYNDROME HAVE EYE PROBLEMS?
Individuals with Down syndrome are at increased risk for a variety of eye and vision disorder, fortunately, many of these eye problems can be treated especially if discovered at an early age, the most common eye finding include:-
Refractive errors – children born with Down syndrome are more likely to need glasses than are other children; this may be due to myopia( near –sightedness), hyperopia ( far- sightedness), or astigmatism, the refractive errors may develop early in life or near school age.
Strabismus between 20% and 60% individuals with Down syndrome have eyes that are misaligned (strabimus), Esotropia (crossed eyes) is most common while exotopia ( eyes that drift out) occurs less frequently, strabismus is treatable with glasses, patching and or eye muscle surgery.
Blepharitis- inflammation of eyelids with redness at the edge of the lids and crusting around the lashes may occur may cause a feeling of dryness or burning, treating is with eyelid hygiene and topical antibiotics.
Treating – excessive treating or watering of the eyes may occur because the drainage channels are blocked or narrow (congenital nasolacrimal dust obstruction), this may require surgical intervention.
kKeratoconus – A cone shaped distortion of the cornea ( front layer of the eye), occurs in up to 30% of those born with Down syndrome. Keratoconus is usually diagnosed around puberty and should be monitored closely, Blurred vision, corneal thinning, or corneal haze may result from keratoconus.
MEDICAL PERONNEL’S HELP. .The community midwife and health visitors will be the first professionals to visit the
family at their homes, they can offer emotional support, advice on practical ways of coping with difficulties such as feeding problems, information on department social security benefits and local services.
. These early days can be very stressful, but after the initial shock there is often a period of positive adjustment and optimism. Parents can be reassured that research shows that stress is not a necessary consequence of parenting a child born with Down syndrome.
. It is true, however that a family life when there is a child born with Down syndrome may be more stressful if the child has extra difficulties such as medical problems or where there are pressures such as shortage of money or support. There is no evidence that brothers and sisters develop more behavioral problems than in other families or that there is more revialry or jealousy.
. A portage, or educationally based pre- school teaching service may be available for assisting with education. An educational psychologist can advice about learning and behavior and will be a key person in the assessment of the child’s special educational needs.
. Some areas will have a community team for people with learning difficulties ( or community mental handicap teams as they were originally and still often are known) they can include social workers, mental handicap nurses and others all with experience in working with people with learning disabilities.
SUPPORT AVAILABLE Most of those involved in providing service to
people born with Down syndrome and their families are:-
Organization supporting Down syndrome, Health workers, Social workers and the independent sectors including many voluntary agencies, the professionals available and the titles the are given.
The Pediatrician (i.e a doctor who specializes in the care of children) is responsible for informing the parents that their child is born with Down syndrome, Hospital midwives and specialist health visitors can be very important tool in providing information and support.
Written information produced by Down’s syndrome Association of Uganda (Dosau) to help new parents can be offered to the families.
WorkersThe parents may wish to meet other
families who have children born with Down syndrome, they can do this through their branches of Down Syndrome Association Of Uganda. Any of the service providers who may want to extend their knowledge of down syndrome , they can contact Down Syndrome Association Of Uganda for advice and information.
SUPPORT AVAILABLE FOR ADULTS WITH DOWN SYNDROME.
After the age of 16 years all are taken for Vocational Training nearby to teach them to do something for themselves, in this case each is trained in different sections /fields such as Craft making, Poultry keeping, Brick making and laying, Bee keeping, Goat Raring, Mixed farming, Tailoring, Piggery keeping, Weaving.
After the training they are provided with the support in groups according to villages/zones so that the monitoring is easy.
All equipments like garden tools, Bulls and Ox- plough for digging, Seeds for planting, Craft making, Poultry keeping, Brick making and laying, Bee keeping, Goat Raring, Mixed farming, Tailoring, Piggery keeping, Weaving all these are provided to them in groups have they have been arranged.
After the age of 16 years hospital care will generally be provided for the adult services.
Staying on at school. Attending local college for further education and taking ordinary courses offered
with extra support where required and the course should be specialized courses for special needs education for people with learning disability.
Some of these classes will be relevant to older people born with Down syndrome who have previously led very sheltered lives in long way and now need to learn daily living skills which will allow them to live more independently.
SHELTER
Shelter for people born with Down syndrome, after 25 years they need a sperate family/ home from the parents and they are to be supported in building their shelters from village/zone to zone..
They are to be supported with utensils and other necessities concerning the home needs.
People born with Down syndrome will move away from their family home members either when they reach adulthood and feel ready as with other young people or when their families are unable to care for them anymore, so here they will generally require some form of supported accommodation.
DOSAU RESOURCE CENTRES Down’s Syndrome Association of Uganda(Dosau) shall
build five resource centers in the whole Country, each region shall have the centre that is in Eastern, Northern, Western, Southern, and Central; this region Hqs shall control the rest of the Districts and it will make the services to reach them in time.
All centers shall be build, equipped with all the staff, all equipments needed possible for the resource centers and etc.
All people born with Down syndrome shall learn from this centers, the centers shall have a primary section, vocational training section, sick-bay, Kitchen, Dormitories and Teacher’s quarters plus reserved land for mixed farming activities.
LEISURE For all of us leisure enhances the quality of our lives, some
people born with Down syndrome excel in activities such as sports, art and music.
Some people born with Down syndrome want special friends, however studies show that they can be quiet isolated, they therefore need opportunities for social contact.
Children born with Down syndrome like other of their age enjoy activities such as basket ball, swimming, teenagers too have the usual range of interest such as music , sports, clubs, Drama clubs, Brownies, Scouts and Guides and Adventure play grounds offer places to young people born with Down syndrome.
It may be helpful for people born with Down syndrome to attend courses in personnel relationships and leisure activities organized by local colleges, adult training centers will also leisure needs of many people born with Down syndrome.
THE STRUCTURE OF DOWN’S SYNDROME ASSOCIATION OF UGANDA(DOSAU)
To create employment for adults with down syndrome and they are employed through paid work, people gain confidence and sense of achievement and worth.
People born with Down syndrome can enter the open job market and become reliable and efficient employees. Others with Down syndrome need a more protected environment in which to develop work skills, a sheltered
workshop will offer this. Adult training centers are run by social services departments and offer a range of activities including Arts and
Sports activities, job training, education in personnel and social skills. The choice of accommodation will depend on their own needs and abilities and the facilities available in the
area. The type of provision available may include sheltered housing where residents with a range of special need live with support staff as a community.
Down’s Syndrome Association of Uganda(Dosau) is a Membership led and driven organization, it is an Association of Members.
Membership is open to anyone who wishes to join us however, members are usually parents or close family members of people born with Down syndrome. Membership is open to Clubs, Institutions, Colleges, individuals and Professional who have an interest in the condition of people born with Down syndrome.
Only full Members of the Association are entitled to vote at meetings, hold office or run a branch of the Association.
Full Membership is only opened to parents of people born with Down syndrome or with other conditions, all other members are known as ASSOCIATES members.
The Association has the network of its branches and groups throughout in Uganda, UK, USA, Canada, South Africa, Kenya, Zimbabwe.
The Board of Trustees is elected from amongst the Membership and is the governing body of the Association, all employed staff are responsible through the Chief Executive Officer to the Board of Trustees.
In this way the Association is accountable to the membership of the Association throughout the country, each year an Annual General Meeting is held+ and all members are invited to attend, accounts and reports from the Chairman, TREASURER ARE RECEIVED.
OUR HOME ADDRESSA Registered Charity No.5914/3089 Incorporation No.43827
DOWN'S SYNDROME ASSOCIATION OF UGANDA (DOSAU), KAMWOKYA EDUCATION CENTRE,OPP. NORTHERN BY PASS ROUND ABOUT, OPP. KABIRA INTERNATIONAL SCHOOL, BUKOTO KYEBANDO KAMWOKYA ROAD, P.O. BOX 20103, KAMPALA.UGANDA. Office TEL:-256 774970853 Mob: 256-745 970853, 772822885, FAX: 256-41-222562
EMail:[email protected];[email protected];[email protected]
Web site: www.idealist.org:Down’s Syndrome Association of Uganda (DOSAU)