rotary cegah thalassaemia
DESCRIPTION
Thalassaemia Prevention program by Rotary IndonesiaTRANSCRIPT
Because Live without :
THALASSAEMIA
(An inherited genetic disease that is passed from parentsto children through the genes /genetic).
Which requires
the sufferer :
• lifetime blood
transfusions need
• more money to
survive
• limited activity
Why it is important to know
if you are a carrier
Although being a
carrier of the
thalassaemia trait has
no adverse health
effects, it becomes
DANGEROUS if a
carrier marries another
carrier.
This is what is
referred to as an “at-
risk couple”. For such
couples there is a
one-in-four (25%)
chance in every
pregnancy that the
child will have
thalassaemia major.
Global Epidemiology of Beta – thalassaemia
Sources : Suthat Fucharoen M.DThalassemia Research Center
Institute of Molecular Biosciences
Mahidol University, Thailand
Prevalensi Thalassaemia
In South Asia
Prevalensi Penyakit Keturunan
(thalassaemia) Menurut Provinsi
RISKEDAS 2007
7.Papua Barat8.Maluku
9.Papua
Prevention programmes have been
successful where the following strategies have
been applied:
A health education programme with
information to the public concerning the
nature of the disease, its consequences to
the child and the methods of prevention
especially the need to know of the risk early.
Screening the population
through simple blood tests,
to identify the carriers.
Counselling of individual carriers and especially of carrier
couples, explaining the risk to their offspring and giving the
couple choices for their future –
these include decisions such as not to marry each
other,
to marry but not have children (e.g. adopt) or
to have prenatal diagnosis with the option of
terminating affected pregnancies.
An alternative is pre-implantation genetic diagnosis
(PGD).
The couples are also free choose to have an affected
child which will be treated according to the best
available methods.
Such strategies will benefit the
couples at risk who will be able
to make informed choices
concerning marriage and
having children.
Thalassaemia Prevention Issues in
Indonesia
There are many obstacles to bring this issue as a
national program such as demographic, ethnicity,
and diversity mutations and phenotypes
There will be 2,500 affected children will
born/year,
but Until October 2011, 5,000 patients registered
patients in all over Indonesia
The number of patients were quite large
but far below the real number in
population because:
Mild mutations
asymptomatic
under diagnosed
Undetected patients by health workers
lack of knowledge
the fact that many patients die young and often
without a diagnosis
What can We do ?
(as a rotarian)
Area Bandung
Socialization
RC of Cilacap
RC of Yogya Tugu
Area Surabaya
RC of Pekalongan
RC of Semarang Kunthi
Campaign
in Bundaran HI
RC Jakarta Gambir&Rotaract
RC of Bali Taman
Berpacaran Sehat dan Benar
Di kalangan Remaja dan memahami
Resiko dari Thalassaemia
RC of Bali Taman
Awareness & PR
Together We Are One