Talasemia adalah kecacatan genetik yang paling biasa didapati, dengan kira-kira 250 juta orang, 4.5 peratus daripada penduduk dunia adalah pengidap yang menghadapi ancaman maut. Pada 2010, Malaysia merekodkan 4,768 orang pesakit talasemia yang memerlukan pemindahan darah yang kerap. Manakala 5% daripada penduduknya adalah pembawa.

WE ARE STM

BannerFans.com

Low Iron Diet for Chronically-Transfused Patient

Very high iron sources are found in the following foods; they should be avoided or eliminated from the diet:

Proteins that should be avoided or eliminated from the diet:

Oysters
Liver
Pork
Beans
Beef
Peanut butter
Tofu


Grains that should be avoided or eliminated from the diet:

Flour tortillas
Infant cereal
Cream of wheat
Malt-O-Meal

Cereals, such as Most, Product 19, Total, Kix, All Bran, Life, Raisin Bran, Special K, 100% Bran, Rice Chex, Rice Krispies, Cornflakes, Wheaties


Fruits/Vegetables that should be avoided or eliminated from the diet:

Prune juice
Prunes
Watermelon
Spinach
Leafy green vegetables
Dates
Raisins
Broccoli
Peas
Fava beans


Northern Comprehensive Thalassemia Center Children's Hospital Oakland
Department of Hematology/Oncology
747 52nd Street, Oakland, CA 94609 Phone: 510-428-3885 x4398
©2003 Children's Hospital and Research Center at Oakland

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Intro to MRI


This video provide information about what is MRI and how it is performed.

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Thalassemia girl hands over excess from donations to fellow patient


Wednesday December 16, 2009
By CHITRA S. NATHAN



SEREMBAN: Living with thalassemia, a blood disorder that requires regular transfusions, is a very painful struggle. Sim Carmen, who is only 12, knows it too well.

That’s why Carmen, who received donations totalling RM355,442 from The Star readers, had no qualms about handing over the excess funds to fellow thalassemia patient Leong Jia Kit, 11, who is hoping to get a cord blood transplant soon.

Carmen, who will be leaving for Taiwan to undergo the transplant next week, said she was happy to help another person in need.

“I know what it is like to go for transfusions almost every week. Getting the transplant is our only shot at leading normal lives like other children our age.


Instant friends: Carmen holding Jia Kit’s hand during the press conference yesterday. Looking on are their mothers Chin Chui Ling (left) and Wai

“I am looking forward to doing regular things like cycling and swimming after my surgery and I am sure Leong (Jia Kit) wishes for the same things, too,” said Carmen, who instantly bonded with Jia Kit when they met for the first time yesterday.

Carmen, who needed RM270,000 from the total amount raised, will be undergoing surgery and treatment at the Chang Gung Memorial Hospital in Linkou, Taiwan, and is expected to remain there for a few months.

Lobak assemblyman Anthony Loke Siew Fook, who co-ordinated the fund-raising, expressed his gratitude to those who contributed generously after reading about Carmen’s plight in The Star on Nov 27.

“With The Star’s help, we managed to raise enough money for not one but two thalassemia patients in record time. The Sims did not hesitate to pass on the extra funds to Leong (Jia Kit) as they understood the predicament his family is in.

“We are not appealing for more funds and any extra that we receive after today will be donated to a thalassemia association or other needy patients,” he said.

Jia Kit’s mother Wai Chooi Fong, 48, said her son was on the transplant list of Universiti Malaya Medical Centre and would be able to have surgery done once a matching donor was found.

“Doctors have told us it may take about two years but we are hopeful that a donor will be found soon,” she said.

Wai, who left her job to care for her son when he was diagnosed at the age of three, advised Malaysians who were contemplating marriage to get tested for thalassemia, which is an inherited condition.

“Both my husband and I are carriers but we did not know about it when we got married,” said Wai.

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International Thalassaemia Day - 8th May

Theme: “THE INFORMED PATIENT: KNOWLEDGE IS POWER”

“The improvement of understanding is for two ends: first, our own increase of knowledge; secondly, to enable us to deliver that knowledge to others.”
- John Locke (1632–1704)

This year’s theme for 8th May has two aspects. The first is the patient’s knowledge and information. At TIF we believe that an informed patient is an empowered patient: the more you know, the better you can manage your condition and your life. The more you know, the better you can interact with your doctors and other carers. And when a lot of knowledgeable, strong individuals come together and join efforts, their collective voice will be even stronger.

Knowledge is power
How often have doctors, nurses and other health professionals said about their patients, particularly those with chronic conditions: “My patients understand their disease better than I do!” The experience and knowledge held by the patient can greatly benefit patient care and quality of life, something which gradually is becoming more recognised by the medical world.

Today’s knowledgeable patients can make decisions regarding their treatment and work in partnership with their doctors, rather than simply being passive recipients of instructions. But in order to do this, the patient needs the power that comes through education and information. This has long been, and still is, one of TIF’s main educational aims.

Sharing the knowledge
The second aspect, as so wisely expressed by the great Enlightenment philosopher, is sharing the knowledge. Patients working together with other patients, parents, volunteers and health professionals – creating associations, getting involved in health policy formulation at a local, then national and even international level. We can really make a difference, not just for ourselves, but for others, too!

The idea of the 2010 slogan is to encourage every patient to become educated, but also to recognise her/his already-existing knowledge, to use it and share it.

© 2008 Thalassaemia International Federation

2 comments:

FQAs DEFERIPRONE


D E F E R I P R O N E

How many times a day should Deferiprone be taken?
Deferiprone is taken in three divided doses, morning, midday and evening.

Is there an interaction with other medicines?
There have been no reports of drug interactions with other prescribed medicines. There is, however, a potential interaction with aluminium-based based antacids, since Deferiprone binds other metallic ions as well as iron. The concurrent use of Vitamin C has not been studied but it is potentially toxic and should be avoided.

Why is it necessary to do a weekly blood count?
In a proportion of patients there is fall in the number of polymorphonuclear cells, the white blood cells responsible for the defence of the body against bacterial infections. This may be severe fall to below 500/cmm known as agranulocytosis: this occurs in about 1.2% of patients taking Deferiprone and it may lead to a serious infection. A less severe fall in the neutrophil count may also occur, between 500–1500/cmm, known as neutropenia. This may be indicate that agranulocytosis is imminent and may also predispose to infection. It is important to detect this fall in white cell count early since interruption of the drug will restore the neutrophil count and avoid any complications. This is the reason for the weekly blood counts.

Is Deferiprone used in pregnancy and breastfeeding?
In animal studies it was demonstrated that this drug can cause damage to the early embryo (teratogenic). This has not been recorded in humans but because of the experience in animals it is unwise to use the drug in both pregnancy and breastfeeding. In fact it is strongly advised to avoid pregnancy while on this medication.

Does Deferiprone predispose to Yersinia enterocolitica infection?
Experimental evidence from the Pasteur Institute of Paris, both in vitro and in a mouse model, indicate that this drug does not promote Yersinia growth and virulence. However, in a Canadian review of clinical infections in thalassaemia patients over 15years, one patient was receiving Deferiprone, while 2 patients were not on any chelating agent and the rest of their cases (11) were taking Deferoxamine. For this reason it can be concluded that Deferiprone is less likely to predispose to Yersinia. In numerous studies on Deferiprone in thalassaemia, cases of Yersinia infection are not mentioned.

Does Deferiprone protect the heart more than other agents?
Comparisons have been made mainly with Deferoxamine. Recent publications confirm that Deferiprone is superior as a cardio-protective agent than Deferoxamine, probably because as a smaller molecule, it can remove intracellular iron from myocardial cells.

Can Deferiprone be used in children?
Formal trials of safety and efficacy have not been conducted in children under the age of 10 years.

© 2008 Thalassaemia International Federation

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SETITIK DARAHMU




SETITIK DARAHMU

Lihatlah insan malang disana
buat mereka ku katakan..
Insan yang perlu pengorbananmu
walau hanya sementara...

Derita mereka bukanlah dipinta
namun hidup diteruskan..
Harapan mereka adalah kita
insan berbelas kasihan...

Reff:
Renunglah seketika..
Wahai insan yang penyayang..
Sadarilah hai teman..
setitik darahmu sungguh bermakna..

Berilah mereka kasih sayang
dengan menderma darahmu..
Andalah pemberi harapan
untuk hidup esok hari..

Renunglah seketika..
Wahai insan yang penyayang..
Sadarilah hai teman..
setitik darahmu sungguh bermakna..

Berilah mereka kasih sayang
dengan menderma darahmu..
Andalah pemberi harapan
untuk hidup esok hari..

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"Yes You Can...!!!" The Team Hoyt Spirit



Here is a summary of living illustration of a spirited attitude of CAN DO

One day, a son asks his dad
"Daddy, would you like to run a marathon with me?"
The father says
"yes son"
And they run their first marathon together.

Another time, the son asks his dad again
"Daddy, would you like to run a marathon with me?"
The father says
"yes son"

Then one day, the son asks his father
"Daddy, would you run the Ironman with me?"
(The Ironman is the most difficult Triathlon ever. Which includes 4 kms swimming, 180 kms biking and 42 km running)
And the dad says "yes son"

It's a saga of a father's LOVE for the child.

To find out more info on the Hoyts go to http://www.teamhoyt.com/hoyt-foundation/index.html

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Thalassemia project from CIMSA Faculty of Medicine Gadjah Mada University

Lyrics

Dibayang wajahmu,
Kutemu kan kasih dan hidup,
Yg lama telah aku cari,
Di masa lalu ah....

Kau dtg pada ku,
Kau tawarkan hati nan luhur,
Selalu mencuba mengerti,
Hasrat dalam diri.

Kau mainkan utk ku sebuah lagu,
Tentang negeri di awan,
Dimana kedamaian,
Menjadi istananya,
Yg kini telah kau bawa,
Aku menuju kesana.

Oh...oh...oh... ternyata hati mu,
Penuh dgn bahasa kasih,
Yg terungkapkan dgn pasti,
Dalam suka dan sedih.

Oh...oh...oh... Kau mainkan utk ku sebuah lagu,
Tentang negeri di awan,
Dimana kedamaian,
Menjadi istananya,
Yg kini telah kau bawa,
Aku menuju kesana.

Oh...oh...oh... ternyata hati mu,
Penuh dgn bahasa kasih,
Yg terungkapkan dgn pasti,
Dalam suka dan sedih.

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GO BLOOD SCREENING FOR THALASSAEMIA

29 Julai, 2009 16:29 PM

Go Blood Screening For Thalassaemia, Urges TAM

KUALA LUMPUR, July 29 (Bernama) -- The Thalassaemia Association of Malaysia (TAM) is urging members of the public to go for screening to determine their health status on this inherited blood disorder.

TAM president Datuk Dr Zulkifli Ismail said this was a crucial preventive step that could save their children from being Thalassaemia patients.

Besides bone marrow transplant, there is no cure as yet for Thalassaemia.

"That is why it is important for people, especially those who are getting married, to go for Thalassaemia screening, because it is the only other way that we can prevent it from spreading and getting worse," he said at a news conference on the inaugural Thalassaemia Awareness Day here Wednesday.

Thalassaemia is an inherited autosomal recessive blood disease, while Thalassaemia major is a disorder where patients cannot make enough haemoglobin because their bone marrow cannot produce enough red blood cells.

Dr Zulkifli said if that both parents were Thalassaemia trait carriers, there was a 25 per cent chance that their children would be born a thalassaemia major, which would require them to undergo monthly blood transfusion to survive, and a 50 per cent chance that they would be carrier of the trait.

He said that based on statistics, at least one out of 20 Malaysians was a Thalassaemia carrier, or approximately 600,000 to one million of the population.

He said the Health Ministry's registry showed that there were some 4,385 Thalassaemia patients are now undergoing monthly blood transfusion, while the number could reach 5,000 by year end.

"This is a startling figure. We hoped that through the event, Malaysians will wake up and take notice of this disorder. We want to get them to do something serious about it, that is to get their blood screened for Thalassaemia," he said.

Thalassaemia Awareness Day 2009 will be held on Aug 9 at Berjaya Times Square from 10am to 8pm.

There will be many activities planned for the day such as blood screening, blood donation campaign and informative games to raise awareness among members of the public on Thalassaemia.

© 2010 BERNAMA. Semua Hak Cipta Terpelihara.

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PERSATUAN THALASSAEMIA MALAYSIA





PURPOSE AND OBJECTIVE 

1. The association is established for the purpose of providing a formal organisation for the benefit of and service to Thalassaemia patients in Malaysia and those having interest in Thalassaemia. Thias association will strive for Thalassaemia patients to get the best and most satisfactory treatment.
2. In order to acheive the purpose and objective stated above, the association shall have the power to carry out the following activities :

(a) To encourage and corordinate the study on the reasons, methods of treatment, prevention and cure of Thalassaemia, and to distribute information about the disease to the public. 
(b) To coordinate, educate and familiarise all members of the Association on the dicipline that need to be followed by every Thalassaemia patient in carrying out their daily activities. 
(c) To communicate with government agencies, satutory bodies and other private organisationsw in Malaysia and with international bodies regarding Thalassaemia.
  
(d) To organise exhibitions, conferences and seminars on Thalassaemia. 
(e) To organise, manage and carry out epidimologic research on Thalassaemia in Malaysia 
(f) To organise, print, publish and distribute articles and/or magazines prepared by the experts on Thalassaemia with the prior approval of the authority concerned. 
(g) To providde advice on matters that should or should not be done by Thalassaemia patientsin order to make them lead normal and useful lives.
(h) To purchase, borrow, rent or any other means, acquire or sell, or manage any properties or other asstes for the purpose and benefit of the Asssociation. 
(i) To receive cash, bonds or share certificates from any individual, group or body and to use them for the benefit of the Association.
(j) To collect, borrow, invest and manage the monies so acquired for the purpose of promoting research, treatment and cure for Thalassaemia.


HALATUJU DAN OBJEKTIF

a) Persatuan ini di tubuhkan untuk menjadi sebuah pertubuhan bagi faedah dan perkhidmatan kepada semua ahli dan keluarga pesakit thalassaemia di Malaysia dan mereka yang berminat dengan penyakit thalassaemia. Persatuan ini akan berusaha agar pesakit thalassaemia mendapat rawatan yang sempurna dan memuaskan. Untuk tujuan tersebut, Persatuan sedang dan akan menjalankan aktiviti-aktiviti yang berikut :

b) Menggalak dan menyelaraskan kajian ke atas sebab-sebab, cara-cara rawatan, cara-cara mengelak dan seterusnya mengubati penyakit thalassaemia, dan menyebarkan maklumat mengenainya kepada orang awam.

c) Menjadi sebuah badan penyalaras keatas semua ahli Persatuan berhubung dengan disiplin yang harus dilaksanakan oleh setiap pesakit thalassaemia dalam menjalankan aktiviti mereka setiap hari.

d) Bertanggungjawab menghubungi agensi-agensi kerajaan dan badan-badan di Malaysia dan antarabangsa berhubung dengan penyakit thalassaemia dan menguruskan sebarang persidangan dan seminar mengenai penyakit thalassaemia. Mengendali, mengurus dan menjalankan siasatan keatas penyakit thalassaemia di Malaysia.

e) Menyusun, mencetak, mengeluar dan mengedar risalah dan/atau majalah yang disediakan oleh pakar thalassaemia dengan mendapat kebenaran pihak berkuasa yang berkaitan terlebih dahulu dan untuk memberi nasihat tentang hal-hal yang patut atau tidak patut dilakukan oleh pesakit thalassaemia untuk membolehkan mereka hidup secara bermakna dan normal.

f) Membeli, meminjam, menyewa atau apa saja cara, mendapat, menjual atau mengendalikan sebarang hartanah atau harta-harta lain untuk tujuan dan faedah persatuan.

g) Menerima wang tunai, bond atau sijil-sijil saham dari sesiapa sahaja orang persaorangan, kumpulan atau syarikat-syarikat, menggunakannya bagi faedah persatuan dan juga untuk meminjam atau mengutip wang untuk melabur dan mengendalikan wang yang diperolehi untuk tujuan mempertingkatkan lagi kajian, rawatan dan pengubatan pesakit thalassaemia.


Disclaimer : Above info are provided by ROS of Malaysia



LATARBELAKANG MISI DAN OBJEKTIF

Persatuan Thalassaemia Malaysia atau selepas ini dikenali sebagai TAM



  • TAM ditubuhkan pada tahun 1987 sebagai sebuah organisasi kesihatan bukan bermatlamat keuntungan.
  • Matlamat penubuhan persatuan ini ialah untuk menyediakan satu wadah rasmi bagi membantu meringankan beban keluarga dan pesakit Thalassaemia di Malaysia.
  • Juga terbuka kepada mereka yang bersimpati dan berminat untuk mengetahui Thalassaemia dengan lebih mendalam lagi.
  • Keahlian TAM terbuka kepada penghidap Thalassaemia seluruh negara dengan bekerjasama dan berganding bahu dengan pertubuhan lain.
 MISI 
  • Misi utama TAM ialah untuk membantu para penghidap Thalassaemia dalam mendapat rawatan kesihatan terbaik.
  • Tumpuan misi utama TAM sekarang beralih kepada memberi kesedaran dan suntikan semangat kepada para penghidap Thalassaemia agar konsisten menggunakan ubat Desferrioxamine (Desferal) atau seumpamanya seperti disyorkan oleh doktor.
  • Disamping itu bengkel-bengkel dan seminar penbangunan diri bagi membina keyakinan diri dan kempen kesedaran untuk masyarakat turut diadakan.
 OBJEKTIF 
  • Untuk berhubung dengan agensi-agensi kerajaan, badan-badan berkanun dan badan swasta di Malaysia serta luar negara tentang Thalassaemia.
  • Mengutip derma untuk membiayai kos aktiviti-aktiviti persatuan,  pameran, persidangan dan seminar berhubung dengan Thalassaemia.
  • Untuk berhubung rapat dengan pihak hospital berkait dengan pemindahan darah kepada pesakit Thalassaemia.
  • Untuk memberi tunjuk ajar kepada pesakit baru dan menganjurkan pertemuan keluarga pesakit-pesakit Thalassaemia.
  • Untuk mengendalikan orang-orang perseorangan dan badan korporat di dalam pengambilan pesakit Thalassaemia sebagai anak angkat.
  • Untuk mendidik pembawa penyakit Thalassaemia (Thalassaemia Minor) tentang “inheritance patterns” penyakit ini.
Disclaimer : Above info are provided by http://thalassaemia.org.my/?page_id=33

Sebarang pertanyaan sila kemukakan kepada :

PERSATUAN THALASSAEMIA MALAYSIA
No.9-2, 2nd Floor, Jalan Pelangi 17,
Taman Pelangi, 51100 Kuala Lumpur.
Tel: +603-40317049
Email: mythalassaemia@gmail.com
www.thalassaemia.my / www.thalassaemia.org.my


15 comments:

Muhammad Hafiz bin Mohamad Yusof


Allahyarham Muhammad Hafiz bin Mohamad Yusof

Posted by Akmal

Marilah kita sama-sama sedekahkan Al-Fatihah untuk Muhammad Hafiz Bin Mohamad Yusof iaitu adik kepada sahabat ku iaitu Muhammad Habibullah Bin Mohamad Yusof (ex- Graphic Designer Sinar Harian KEL & TRG). Allahyarham meninggal dunia pada jam 11.05 pagi 27/5/2009 di Hospital Kuantan pada umur 24 tahun. Menurut abang allahyarham, Saudara Habibullah, allahyarham telah lama mengidap penyakit talasemia sejak drpd kecil lagi. Allahyarham adalah seorang kuat semangat dan tabah, sejak dari kecil lagi allahyarham perlu pergi ke hospital untuk masukkan darah dan pemeriksaan doktor.

Pada tahun 2001, allahyarham telah selamat menjalani pembedahan membuang limpa dan tidak perlu lagi memasukkan darah setiap bulan. Cuma perlu makan ubat antibodi dan pergi pemeriksaan doktor setiap bulan sahaja. Selepas itu allahyarham menjalani kehidupan seperti biasa dan aktif dalam permainan bola sepak, bowling, jalan-jalan dan lain-lain.Selepas 2 tahun, allahyarham tidak ambil lg ubat antibodi kerana merasa sihat.

Tetapi apakan daya, ajal maut itu di tangan tuhan yang maha kuasa. Pada jam 12 malam 27/05/2009, allahyarham dimasukkan ke hospital Kuantan akibat demam, kemudian pada pagi Subuh allahyarham berada dalam keadaan tidak sedar akibat kuman yang telah merebak ke seluruh organ. Pada jam 11.05 pagi 27/05/2009, allayarham menghembuskan nafas terakhirnya di Hospital Kuantan. Jenazah allahyarham telah selamat di kebumikan pada petang itu juga selepas asar pada jam lebih kurang 5.45ptg di Beserah, Kuantan.

Jadi, utk sesiapa mengenali allahyarham Muhammad Hafiz bin Mohammad Yusof adik kepada sahabatku ini, Muhammad Habibullah Bin Mohamad Yusof. Marilah kita sama2 Sedekahkan Al-Fatihah agar rohnya dicucuri rahmat dan ditempatkan dikalangan para solihin. Ameen.

Copyright © 2010 www.aktechpage.com – Learn, UnLearn & ReLearn
o2 2.0 : Designed by eches

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TAHUKAH ANDA ?


KIRA-KIRA 5% rakyat Malaysia pembawa thalassaemia trait dan ini bermakna hampir SATU JUTA rakyat negara ini pembawa thalassaemia trait

ANDA kelihatan normal tetapi anda berkemungkinan pembawa thalassaemia trait

THALASSAEMIA hanyalah sejenis kecacatan darah dan bukannya penyakit dalam erti kata yang sebenarnya kerana ia tidak melibatkan sebarang kuman atau virus

THALASSAEMIA trait atau major diwarisi iaitu ianya boleh diturunkan oleh ibubapa kepada anak-anaknya

TIDAK terdapat sebarang manifestasi atau tanda penyakit di kalangan pembawa thalassaemia trait

THALASSAEMIA bukanlah sesuatu yang menyakitkan dan tidak menjejaskan kesihatan pembawanya

THALASSAEMIA boleh dikesan hanya melalui ujian darah sahaja

TIADA apa buruknya menjadi pembawa thalassaemia trait dan kita tidak perlu rasa malu atau segan kerana mewarisi thalassaemia trait

PEMBAWA thalassaemia trait boleh jejaskan kesihatan anak-anaknya yang lahir nanti jika dia mengahwini pembawa thalassaemia trait

JIKA anda bebas dari mewarisi thalassaemia, anda boleh mengahwini sesiapa sahaja termasuk pembawa dan pesakit thalassaemia

TIADA seorang pun yang boleh mendabik dada bahawa beliau bebas dari thalassaemia sebelum beliau menjalani ujian darah bagi mengesan thalassaemia

BENIH thalassaemia boleh dibawa oleh sesiapa sahaja, tidak kira jantina atau keturunannya

JIKA kedua-dua ibubapa pembawa thalassaemia trait, 25% kemungkinan anak mereka akan mengidap thalassaemia major yang memerlukan pemindahan darah sekali sebulan dan 50% kemungkinan anaknya lahir sebagai pembawa thalassaemia trait

SETIAP pengidap thalassaemia major memerlukan pemindahan darah setiap 4-6 minggu seumur hidup

KANAK-KANAK pengidap thalassaemia major tidak dapat mengeluarkan hemoglobin yang mencukupi kerana sum-sum tulang mereka tidak boleh mengeluarkan sel darah merah yamg sempurna

KANAK-KANAK pengidap thalassaemia major dilahirkan normal tetapi akan menjadi anemia antara umur 3 hingga 6 bulan apabila mereka menjadi pucat, tidur tidak nyenyak, kurang selera makan dan ada yang muntah-muntah

JIKA kanak-kanak pengidap thalassaemia tidak dirawat, mereka akan hidup menderita dan biasanya akan mati antara umur 1 hingga 8 tahun

MASYARAKAT berhutang sekurang-kurangnya dua pain darah sebulan kepada setiap pengidap thalassaemia major yang dilahirkan untuk seumur hidupnya

SETIAP pengidap thalassaemia major memerlukan rawatan untuk mengeluarkan zat besi yang berlebihan akibat dari pemindahan darah

JIKA zat besi tidak dikeluarkan, besar kemungkinan pengidap thalassaemia major akan mati sebelum mencapai alam kedewasaan

ZAT besi berlebihan akan menjejaskan organ didalam tubuh pengidap thalassaemia major, seperti hempedu, buah pinggang, hati, paru-paru, jantung dan sebagainya

KOS rawatan untuk mengeluarkan zat besi berlebihan dari badan pesakit thalassaemia major tidak kurang daripada RM500 sebulan atau RM6,000 setahun

LIMPA dan hati pengidap thalassaemia major membengkak menyebabkan perutnya buncit dan limpa sebilangan daripada mereka telah dibuang melalui pembedahan supaya pemusnahan sel darah merah dapat di kurangkan

PEMBAWA atau pesakit thalassaemia juga boleh berkahwin dan melahirkan anak

THALASSAEMIA tidak boleh diubati kecuali melalui rawatan pemindahan sum-sum tulang

PENGIDAP THALASSAEMIA major yang mendapat rawatan sepenuhnya boleh menjalani kehidupan yang normal dan mencapai kejayaan yang cemerlang dalam kehidupan mereka

SANGGUPKAH ANDA LIHAT …

KANAK-KANAK thalassaemia major menderita dan mati sebelum mencapai umur belasan tahun kerana tidak mendapat rawatan pemindahan darah?

KANAK-KANAK thalassaemia major mati sebelum mencapai kedewasaan kerana tidak mendapat rawatan pengeluran zat besi dari badan mereka?

PENGIDAP thalassaemia major menderita dan mati kerana tidak berkemampuan membiayai rawatan pemindahan darah dan pengeluaran zat besi dari badan mereka?

ADAKAH ANDA …

PERNAH menjalani ujian darah bagi mengesan penyakit seperti thalassaemia?

MEWARISI thalassaemia trait dan salah seorang daripada pembawa thalassaemia trait?

MEMPUNYAI ahli keluarga yang dikesan sebagai pembawa thalassaemia trait atau pengidap thalassaemia major?

MEMPUNYAI anak yang pucat, selalu letih dan tidak aktif bermain, perut membuncit dan pertumbuhan badannya terbantut?

MAHUKAH ANDA …

MENGAHWINI seorang pembawa thalassaemia trait jika anda juga telah dikesan sebagai pembawa thalassaemia trait?

MELIHAT rakyat Malaysia generasi akan datang menderita kerana mewarisi thalassaemia major?

MELAHIRKAN anak setelah anda tahu bahawa 25% kemungkinan anak anda dilahirkan sebagai pengidap thalassaemia major?

PERGI ke hospital setiap bulan bagi menjalani pemindahan darah anak anda?

MENYUNTIK anak anda setiap malam selama lima malam seminggu bagi mengeluarkan zat besi berlebihan dari badan anak anda?

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ABOUT THALASSAEMIA


Thalassaemia is the name of a group of genetic inherited disorders of the blood. More specifically, it is a disorder of the haemoglobin molecule inside the red
blood cells.

It is an inherited genetic disease, i.e. a disease that is passed from parents to children through the genes. It is not infectious and cannot be passed on from one individual to another by personal or any other contact, through blood transfusion, food or air.

The two main types of thalassaemia are β (beta) and α (alpha). Both affect the production of normal haemoglobin – a key constituent of human red blood cells. Other abnormal types of adult haemoglobin, also known as structural haemoglobin variants, have been identified. These include haemoglobin S (HbS), haemoglobin E (HbE), haemoglobin C, haemoglobin D and Lepore.

Structural haemoglobin variants can combine with β-thalassaemia to produce other related clinically significant blood disorders.


The Name Thalassaemia

The name β-thalassaemia derives from a combination of two Greek words: thalassa meaning sea, i.e. the Mediterranean Sea, and anaemia (“weak blood”).

β-thalassaemia is also known as Mediterranean anaemia. Both of these names reflect the fact that the disorder was first described in patients originating from countries around the Mediterranean, and for many years it was believed that thalassaemia occurred exclusively in these countries.

Another term, nowadays less frequently used in literature, for β-thalassaemia is Cooley’s anaemia, in recognition of the contribution of Professor Thomas Cooley,
a paediatrician in the United States who first described the clinical characteristics of this disorder in patients of Italian origin in 1925.


Terminology

Individuals who are carriers of the β-thalassaemia/Mediterranean anaemia/Cooley’s anaemia trait (sometimes referred to as stigma), or with β-thalassaemia minor, or the heterozygous form of β-thalassaemia are not patients, but individuals who have inherited a normal haemoglobin (B-globin) gene from one parent and the defective gene from the other parent.

Individuals with β-thalassaemia major or Mediterranean anaemia or Cooley’s anaemia, or homozygous β-thalassaemia are those who have inherited both the defective haemoglobin (B-globin) genes, one from each parent. These individuals
are going to develop the full-blown disease.


About carriers of the Thalassaemia trait

Carriers of the thalassaemia trait do not have a disease. They have no physical or mental symptoms and do not require a special diet or medical treatment. The condition cannot become a serious disease over time – indeed, most carriers will be unaware that they carry the trait unless specifically tested. Some carriers may experience mild anaemia, which may be inaccurately diagnosed as iron deficiency anaemia. However, laboratory tests can differentiate between the two. Pregnant women carriers may experience moderate anaemia which is addressed by prescribing iron supplements during pregnancy

2008 Thalassaemia International

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FQAs ON THALASSAEMIA

FAQs On Thalassaemia

Q: WHAT IS THALASSAEMIA?
A: Thalassaemia is a hereditary disorder. It can be inherited from both the parents. It can affects males and female alike.


Q: WHAT ARE THE PERCENTAGE OF RISK FOR EVERY PREGNANCY?
A: When both father and mother are thalassaemia carriers, the following can occur:\n 25% chance the child will be thalassaemia patient\n 50% chance the child will be thalassaemia carrier\n 25% chance the child will be normal


Q: WHAT ARE THE SIGNS AND SYMPTOMS OF THALASSAEMIA PATIENT?
A: At birth the baby will appears as normal but after 3 to 18 months, the child will slowly show signs of anaemia which become severe.\nAs the child grows older, he/she appears very pale and sickly. The child is often weak and restless. Severe anaemia can cause breathing difficulties.\nWithout adequate treatment the child will develop:\n Distended abdomen due to enlargement of liver and spleen\n Stunted growth\n Changes in facial bone structures\n Jaundice


Q: WHAT ARE THE TREATMENT FOR THALASSAEMIA PATIENT?
A: 1. Blood Transfusion:\nThalassaemia patients require blood transfusion on a monthly basis. Continuous blood transfusion without chelation therapy will cause iron overload. Complications from iron overload may result in heart failure, multiple organ malfunction and endocrine disorders.\n2. Chelation Therapy:\nExcessive iron can be removed by chelation therapy. \n3. Bone Marrow Transplant:\nBone marrow transplant can only be carried out if there is a suitable donor.


Q: WHAT IS BLOOD?
A: Blood consist of a yellow fluid called plasma and different types of blood cells such a red blood cells and white blood cells. Red blood cells contain haemoglobin; a substance that carry oxygen. The body needs oxygen to function and haemoglobin carries the oxygen from the lungs and delivers it to different parts of the body. Blood is red because of the iron content in the haemoglobin. Thalassaemia is a disease of red blood cells.


Q: WHAT IS THE BASIC STRUCTURE OF HAEMOGLOBIN PROTEIN?
A: Each haemoglobin is made up of iron and 4 protein chains. The adult haemoglobin (HbA) is made up of 2 alpha and 2 beta chain.


Q: WHAT ARE GENES?
A: Every human characteristic like eye colour, height, or type of haemoglobin is controlled by “genes” which is inherited from the parents. A child inherits two genes for every characteristic (one from each parent). You look like your parents because you have inherited half of your father’s and half of your mother’s genes.


Q: WHAT IS A THALASSAEMIA CARRIER?
A: A carrier has inherited one normal gene and one thalassaemia gene . The thalassaemia gene cannot produce haemoglobin, or can only produce a small amount. Thalassaemia carriers have less haemoglobin in each red blood cell and their red blood cells are smaller than usual. Thalassaemia carriers healthy and normal. A carrier can only be detected through thalassaemia screening.


Q: WHY IS IT IMPORTANT TO KNOW THAT YOU ARE A CARRIER?
A: It gives you an opportunity to choose a partner who is not a carrier. When you are ready to get married it is very important that you and your part go for genetic counselling. Your partner will also be screened for thalassaemia. If you and your partner are both carrier there is a 1in 4 chance that your child will have thalassaemia major. If your partner is not a carrier then all your children will be healthy.


Q: HOW TO KNOW IF YOU ARE CARRIER?
A: Through blood test:\nA sample of blood is required . The blood sample is sent to the laboratory for testing . The blood results will then be informed.



Ministry of Health Malaysia, Parcel E, Pusat Pentadbiran Kerajaan Persekutuan, 62950 Putrajaya, Malaysia

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