3. MISSION
rking as a coordinating, facilitating and enabling
dy of and for Individuals, Institutions, Organisations
d groups of persons involved in helping children born
h Down syndrome, PWDs and the families they live
in Uganda as a charitable, non- profit making, non-
nominational but a Voluntary Non- Governmental
ganisation limited by guarantee
4. 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.
5. 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.
6. 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.
7. 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.
8. 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).
10. 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.
11. RISK AND MATERNAL AGE
AGE 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
12. 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.
13. 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
14. 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.
15. 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.
16. 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.
17. 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.
18. Workers
The 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.
19. 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.
20. 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.
21. 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.
22. 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.
23. 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.
24. OUR HOME ADDRESS
A 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:dosau2000@yahoo.com;sagwaya.dosau2000@yahoo.
com;herbertkyg@gmail.com
Web site: www.idealist.org:Down’s Syndrome Association
of Uganda (DOSAU)
