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