Persatuan Thalassaemia Malaysia
3rd Floor, National Cancer Society Building,
66, Jalan Raja Muda Abdul Aziz
50300 Kuala Lumpur
Tel : 03-26941141 Fax : 03-26941142
Email : malaysiathalassaemia@yahoo.com
pertam@po.jaring.my

Thalassaemia Society Of University Hospital
Address: Department Of Paediatrics,
University Hospital, Lembah Pantai,
59100 Kuala Lumpur.
Tel: 03-79502275 Fax: 03-79556114

The Penang Thalassaemia SocietyAddress : Room CO-38 & 39 UP, Kompleks Masyarakat Penyayang
Jalan Utama, 10450 Pulau Pinang.
Tel/Fax: 04-2272133
E-mail: penthal@streamyx.com
Patron: YABhg Toh Puan Datin Seri Hajah Majimor bt Sharif


THALASSAEMIA CLINICS

Klinik Pakar Kanak-Kanak,
Penang General Hospital
Tel: 04-2002299
Ambulatory Care Centre (ACC),
Unit Rawatan Harian Perubatan (Day Care Centre),
2nd Floor, Haematology - Thalassaemia Adult & Paediatric
Persons in Charge:
Zailawati Bt Mamat ( Adult ),
S/N Noorhafisah Bt Radzi (Paediatrics )
Tel: 04-2293333 Ext 2809

Klinik Pakar Kanak-Kanak,
Seberang Jaya Hospital, Prai.
Tel: 04-3983333


FEDERATION MALAYSIA THALASSAEMIA SOCIETY
Address : 5017, 1st Floor Bangunan PKNK,
Jalan Tun Abdul Razak
05200 Alor Setar,
Kedah Darul Aman.
Tel: 04-7303039


THALASSAEMIA SOCIETIES OF OTHER STATES
Johor Thalassaemia Society
Address: Lot 5395, Jalan Kurniawati
Jalan Kurniawati,
Kampung Kurnia,
80250 Johor Bahru.
Tel: 07-3320369 Fax: 07-3332724

Kedah Thalassaemia Society
Address: C/O No. 97,
Taman Nuri Jalan Dato Kumbar,
05300 Alor Setar,
Kedah Darul Aman
Tel/Fax: 04-7306340

Malacca Association Of Thalassaemia
Address: No. 21,
Jalan Malinja 1 ,
Taman Malinja,
75150 Bukit Baru, Melaka.
Tel/Fax: 06-2836937

Sabah Thalassaemia Society
Address: P.O. Box 22748,
88787 Luyang Kota Kinabalu, Sabah.
Tel/Fax: 08-8252176

Sarawak Thalassaemia Society
Address: C/O 8 Kim San Court,
93200 Kuching, Sarawak.
Tel: 082-240881 Fax: 082-415691

Perak Thalassaemia Society
Address: No.44, (1st Floor) Jalan Masjid,
30300 Ipoh, Perak
Tel/Fax: 05-2432470

Kuantan Thalassaemia Society
Address: No.8, Lorong Air Putih 1,
Off Jalan Beserah, 25300 Kuantan,
Pahang Darul Makmur.
Tel/Fax: 09-5669180

Kelantan Thalassaemia Society
Address: Lot 1251,
Level 1 Depan Istana Mahkota Yahaya Petra,
Jalan Sultan ,Kubang Kerian,
15200 Kota Bahru, Kelantan.
Tel: 09-7646206 Fax: 09-7646208

Thalassaemia Society Of University Hospital
Address: Department Of Paediatrics,
University Hospital, Lembah Pantai,
59100 Kuala Lumpur.
Tel: 03-79502275 Fax: 03-79556114

What Is Thalassemia?
(also known as Mediterranean anemia, or Cooley's Anemia) is a genetic blood disease. People born with this disease cannot make normal hemoglobin (anemia) which is needed to produce healthy red blood cells.

Who carries Thalassemia?
People of Chinese, South Asian, Middle Eastern, Mediterranean or African origin.

What is Thalassemia Minor?
People with a thalassemia mutation only in one gene are known as carriers or are said to have thalassemia minor. Thalassemia minor results in no anemia or very slight anemia. People who are carriers do not require blood transfusion or iron therapy, unless proven to be iron deficient.

What is Thalassemia Major?
Children born with thalassemia major usually develop the symptons of severe anemia within the first year of life. Lacking the ability to produce normal adult hemoglobin, children with thalassemia major:

- are chronically fatiqued
- fail to thrive, and
- do not grow normally

Prolonged anemia will cause bone deformities and eventually will lead to death within the first decade of life. The only treatment to combat severe anemia is regular blood transfusions.

How can Thalassemia be treated?
Regular blood transfusions allow patients with thalassemia major to grow normally and be active. Unfortunately, transfusions result in deadly accumulation of iron in the hearts and livers of patients by their teenage years. If the excess iron is not removed then the patients may suffer from a premature death due to iron overload.

Nowadays, drugs designed to remove excess iron (iron chelators) have significantly changed the prognosis of thalassemia major. Patients can grow and develop normally, with relatively normal heart and liver functions. Adult patients are living into their forties and some have children of their own.

Despite improved prognosis, many patients find the nightly 10 hour infusions difficult or painful and are reluctant to comply with their doctor's orders. These patients are not free of risk and may die prematurely due to iron overload.

Current treatments allow thalassemia patients to live relatively normal lives, however, a cure remains to be found. The genetic cause of thalassemia was one of the first genes discovered in the 1970's, yet 30 years later, gene therapy still eludes thalassemia patients.

Do you carry Thalassemia?
Many people from the areas of the world where thalassemia is common carry the gene for it on one chromosome (that is, they have thalassemia minor). You may believe that your blood has been tested for this specific gene but testing for thalassemia requires a special blood test. To be tested your doctor must order a blood test called HEMOGLOBIN ELECTROPHORESIS which can identify a carrier of thalassemia.

If you, your parents or ancestors are from an area of the world where thalassemia is common, PLEASE REQUEST hemoglobin electrophoresis blood test from your doctor.

It is important to identify yourself as a possible carrier of thalassemia (thalassemia minor). A person with thalassemia minor has a 25%(1 in 4) chance of having a baby with THALASSEMIA MAJOR if his/her mate also has thalassemia minor.

How do you inherit Thalassemia?
If both parents carry thalassemia minor, their children may have thalassemia minor, or they may have completely normal blood, or they may have thalassemia major. In each pregnancy there is a one in four (25%) chance that their child will have normal blood, a two in four (50%) chance that the child will have thalassemia minor or a one in four (25%) chance that the child will have thalassemia major.

How can we prevent Thalassemia?
Please share the information on this website with others. Show it to your family, friends, neighbours, coworkers or anyone who has origins from areas where thalassemia is common. Be sure to ask your doctor to test you for thalassemia minor. Increased awareness is the key.

Does a cure exist?
Presently, the only available treatment for iron overload in thalassemia patients is pump-infusion therapy. Patients that cannot tolerate the side-effects of the daily injections or medicine may refuse this burdensome therapy and eventually die of iron overload.

A cure needs to be found. Please do your part by spreading the word.




http://www.thalassemia.ca/

What is Thalassemia Major

The severe form of Thalassemia, Thalassemia major, occurs when a child inherits two mutated genes, one from each parent. Children born with Thalassemia major usually develop the symptoms of severe anemia within the first year of life. They lack the ability to produce normal adult hemoglobin (red blood cells). Children with Thalassemia major are so chronically fatigued they fail to thrive and do not grow normally. Left untreated, this disorder will cause bone deformities and eventually will lead to death within the first decade of the child’s life.

The only treatments that are provided to patients are regular transfusions of red blood cells. Thalassemia major patients require transfusions of red blood cells, every 4 to 6 weeks depending on the individual’s consumption of the infused cells. The complication that results from constant blood transfusions is iron overload, also known as secondary hemochromatosis. Once iron is stored in the organs, it will eventually lead to organ failure and will lead to death.

Iron is a component of hemoglobin, essential to the body, but once red blood cells break down the excess iron cannot be removed, resulting in the absorption of too much iron in the body. It is necessary that this excess iron be removed because it stores in the vital organs of the body, such as the heart and liver. Fortunately, a drug called Desferrioxamine (Desferal) is designed to remove the excess iron from the thalassemic patient.

Although, Desferal has significantly changed the prognosis of patients with Thalassemia major, many of the patients find the nightly 10-12 hour infusions of Desferal tedious, have difficulty with compliance, and find the pump-injected medication painful. Currently, this is the only treatment available to Thalassemia patients, a cure needs to be found.

http://www.thalassemia.ca/

What is Thalassemia Intermedia?

Thalassemia Intermedia is a milder form of Thalassemia that is caused by the of one of the more severe thalassemic genes and one of the milder thalassemic genes. Children with Thalassemia intermedia start to develop symptoms later in life than those with Thalassemia major, usually becoming pale and developing symptoms around 2 years of age. They are moderately anemic but a large number of the patients survive without regular blood transfusions.

The severity of Thalassemia intermedia isn't determined by hemaglobin levels alone; it also depends on how the individual's feelings, and their growth rate and development. Unfortunately, there isn’t a much of a clear distinction between Thalassemia intermedia and Thalassemia major.

http://www.thalassemia.ca/

What is Thalassemia Minor?

In Thalassemia minor, the hemoglobin genes are inherited during conception, one from the mother (egg) and one from the father (sperm). People with a Thalassemia trait in one gene are known as carriers or are said to have Thalassemia minor. The only way to know if you carry the Thalassemia trait is to have a special blood test called hemoglobin electrophoresis which can identify the gene. The carriers of Thalassemia minor become anemic or slightly anemic.

If you, your parents, or ancestors are from 'Thalassemia regions' (identified in What is Thal), request a test from your doctor. It is vitally important to identify yourself as a possible carrier of Thalassemia minor. Possessing the Thalassemia minor trait gives you a 25%, (1 in 4) chance of having a baby with Thalassemia major, providing that both parents of the child are both carriers of the disorder. Increased awareness is the key to prevention.

http://www.thalassemia.ca/