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.




Perlukan pandangan anda yang tulus dan ikhlas. Khususnya Thalassaemic.

Pesakit-pesakit dewasa kini telah meningkat bilangannya daripada dahulu.

Di Hospital Ampang sahaja mempunyai kira-kira 300 pesakit dewasa. Dan di sini juga terdapat pesakit yang berusia lebih 40an. Dengan kualiti rawatan dan perubatan yang meningkat, kadar jangka hayat dengan itu juga meningkat.

Kalau selama ini perhatian dan publisiti diutamakan kepada kanak-kanak atau bahagian pediatrik. Kini saya rasa tumpuan itu tidak lagi relevent.

Pesakit dewasa menghadapi cabarannya yang tersendiri. Mereka perlu bekerja, berkeluarga dan mereka juga punyai impian. Berbeza dengan pesakit-pesakit remaja dan kanak-kanak yang masih punyai tempat berteduh dan mengadu disamping ayah dan ibu. Dan sudah pasti cabaran dan keperluannya berbeza.

Untuk anda yang telah berusia dewasa apakah cabaran-cabaran yang dihadapi?

Apakah yang anda perlukan untuk menjalani kehidupan yang lebih sempurna?

Demi masa depan yang gemilang untuk anda juga keluarga tersayang.


A Different Duty For Nurses

Saturday August 21, 2010

A GROUP of nurses spent their weekend to wash cars for a charity drive to raise funds for 10-year-old Liew Chon Kong, who is suffering from Thalassemia.

Held at Suzuki Aiman Motor Sdn Bhd at Jalan Maarof, Kuala Lumpur the nurses took turns to wash every car that was driven in.

The team organised the charity car wash with the courtesy of Suzuki Aiman Motor who sponsored the venue and services.

Give us your cars: Mak (left) with her colleagues all ready with buckets, a hose and scrubs.

The organising chairperson Patricia Mak said when she read the article about Liew in The Star on July 26, a voice urged her to help the little boy.

“I called my friends and we came up with the idea to carry out a charity car wash,” said Patricia, who works as a staff nurse in a clinic at Sri Petaling.

Liew has been suffering from Thalassemia since he was one and desperately needs a stem cell transplant to prevent liver and heart damage.

All proceeds from the day’s car wash is for Liew’s operation expenses, which will be held in Taiwan.

Those interested in helping may also contact the Johor MCA headquarters at (07) 223 3915.

Copyright © 1995-2010 Star Publications (M) Bhd (Co No 10894-D)



All of his art work availabe here at Art of Faisal Saeed


Transition of patients with thalassaemia and sickle cell disease from paediatric to adult medicine

TIF MAGAZINE APRIL 2010 http://www.thalassaemia.org.cy/

Transition of patients with thalassaemia and sickle cell disease from paediatric to adult medicine

Based on a presentation given at the 2nd Pan-European Conference on Haemoglobinopathies
By Dr Holger Cario, Department.of Paediatrics and Adolescent Medicine, University Hospital Ulm, Germany

More than 30 years ago, the majority of chronically ill children did not survive into adulthood. With the advent of innovative technologies and medical advances, many chronically ill adolescents – including patients with haemoglobinopathies – cross the threshold into adulthood every year. Successful transition of chronically ill adolescents from paediatric to adult medical care continues to be a challenging process. Often, the transitioning experience consists of an abrupt transfer, which leaves the youth unprepared for the movement to adult health care. Because adolescents and young adults with haemoglobinopathy are at risk of developing severe medical complications, obstacles that impede transition to adult care must be identified to promote an uninterrupted transfer.
The transition of patients with haemoglobinopathies from paediatric to adult health care is a complex and multisided process. The consideration of the following “sides”, or aspects, of this process is of particular importance for its successful management and finally, for an optimal continuous medical care for patients with thalassaemia major (TM) or sickle cell disease (SCD).

1.Medical Treatment
This comprises all aspects of intrinsic medical treatment, i.e. treatment with regular medical drugs (for instance analgesics and hydroxycarbamide in SCD, chelation therapy and drugs for secondary complications in TM), emergency treatment, and transfusion in TM or exchange transfusion/erythrocytapheresis in SCD. It is of particular importance for the patients’ adherence and compliance, and thus for treatment success, that medical care for a specific disorder in both paediatric and adult health care is based on common standards. Depending on national or regional conditions, the degree of implementation of such common standards is currently varying.

2. Education and Training of medical staff
This aspect is very closely related to the first. Apart from the central medical care provider, the paediatric or adult haematologist, many other persons involved in the medical care need adequate training to meet the needs of these complex disorders. This group comprises subspecialists such as cardiologists and endocrinologists, nurses, educators, psychologists, social workers and others. A very close collaboration of these caregivers is essential for a successful treatment.
In countries where haemoglobinopathies affect primarily patients with a background of migration, and where migration occurred rather recently, patients only started to enter adulthood, and to look for treatment by adult health care services, during the last ten or fifteen years. Thus, adult health care providers inevitably had limited experience in the management of these rare disorders. In order to pass over knowledge and experience, not only is it important to have a close collaboration between different subspecialists and health care professionals within a medical care unit, but also a very close collaboration between paediatric and adult haematologists.

3. Health Care Setting
The health care setting varies from country to country, and sometimes even between regions within a country. For many patients, the transition from paediatric to adult care will be associated with transition from a rather familiar ambience within an in-patient clinic to an out-patient clinic focussed on the care for self-managing individuals. Even patients treated in paediatric out-patient clinics will feel such fundamental change, since they got used to the ambience and to individual health care providers, particularly nurses and other supporting staff, knowing them for their whole life.Therefore, transition to adult health care must include the careful preparation of patients to these changes to avoid frustration and retraction.

4. Adolescence and Puberty
At the time of transition, patients usually are at the end of their puberty. Classic adolescent rebellion can be an added problem for patients with chronic illness. Actually, puberty certainly represents one of the most vulnerable periods in the life of each patient with haemoglobinopathy. Adolescents with thalassaemia begin to challenge the need to continue chelation treatment, even after the introduction of alternative medical drugs without the physical burden of deferoxamine. They stop adhering. Patients become aware of physical problems caused by their disease or its treatment. And puberty itself can be disturbed by hypogonadism caused by iron overload representing a major burden for affected patients. All these problems have to be considered within the transition process, which should follow a standardised plan but has to be realised in an individualised way.
In addition to hypogonadism, other complications of iron overload, such as cardiac disease or diabetes mellitus, may occur in the same period. In these cases it has to be weighed very carefully where (in paediatric or adult medicine) treatment of such complications should be initiated. The ideal way, of course, would be the collaborative approach.

5. Social Activities
At the end of adolescence, there are other issues besides the transition from paediatric to adult medical care that predominate the life of young adult patients with TM and SCD. These include professional training, jobhunting, love, family planning and others. In some countries, personal responsibilities for health insurance and the payment for medical care are associated with additional problems for the patient. These aspects should be included in a transition programme. Both paediatric and adult health care workers have to develop possibilities to provide continuous support concerning these questions before, during, and after the transition.

6. The Families
The role of the family in the medical care of patients with haemoglobinopathies, and the transition process, varies depending on national, regional, and ethnic conditions, but everywhere it is of great importance. During infancy and childhood, the families and the parents in particular guarantee adequate medical treatment of their children. In adult medicine, the individual patient with self-care responsibility is the immediate partner of the physician or subspecialist. With regard to this aspect, an abrupt change from paediatric to adult care would certainly have an adverse effect on further treatment, adherence and compliance.
The influence of the parents may decrease during puberty. In the positive case, patients develop self-efficacy and self-care responsibility. In the negative case, the lack of compliance and adherence result in a long period of inadequate treatment, which can have even fatal consequences. Thus, patients’ education concerning their diagnosis, treatment, and preventive measures, but also psychological and social support, are of central importance within this period. Parents need encouragement to handle this situation, to acknowledge the increasing personal responsibility of their children, and to settle into their new role as accompanying partner and supporter. The transition of patients with haemoglobinopathies and other chronic disorders is not a one-off event, but a long-lasting process. Transition programmes must be developed in collaboration between paediatric and adult health care providers. They should consider the above-mentioned aspects, and therefore include the availability of common treatment standards, the collaboration within a multidisciplinary team and between paediatric and adult haematologists, the training of health care professionals, the education of the patient, the integration of the patient into decision-making, and the help for the families to strengthen their ability to support the patient in and after the transition process. The administrative handling of the transfer from paediatric to adult medical care should be planned in advance, including the transfer of relevant records. The timing of transfer should be flexible, depending on the patient’s developmental and social background. Thus, based on a standardised programme, the transition process should be tailored for each individual patient.


Care for Adult Thalassemics

talasemia transfusi

by Laurice Levine, MA, CCLS
Thalssemia Outreach Coordinator
Children's Hospital and Research Center at Oakland

Thalassemia is a rare and complex disease which in the past took the lives of children prior to their teenage years. Thankfully, due to improved technology and medical advances, the lifespan for thalassemics now extends into adulthood. Consequently, serious consideration must now be given to adult care. Since thalassemia is a childhood illness, many adults are seen in pediatric hospitals-often, in centers of specialty for thalassemia. Compared to a decade ago, many more patients in thalassemia centers are now adolescents or older. The topic of adult care is especially important, as the adult population of thalassemics is ever-increasing and has now reached 44 percent of the total thalassemia population in the U.S. and Canada. (This number reflects the patients in the United States and Canada that are registered in the Thalassemia Clinical Research Network. Provided by Children's Hospital and Research Center, Oakland, California.) Unfortunately, pediatric hospitals are not fully equipped to meet the changing and complex needs of adults. This article will provide and overview of adult care, a time study, pediatric versus adult settings, challenges, and suggestions for improvement will be discussed. It is vital that the challenges surrounding adult care are addressed immediately-the quality of life for adults living with thalassemia will be improved, and learning from this generation will enhance the lives of the future, as well.

Medical Challenges

The aging process presents new challenges for adult thalassemics and the providers who care for them. Osteoporosis, complex cardiology issues, organ failure, and pain management are not childhood problems. Many of these medical challenges require adult specialists, but unfortunately, these specialists lack specific knowledge of thalassemia. It is difficult to find a provider who has understanding of the whole patient and the complexities of thalassemia care. Fertility and family planning are newer medical needs which are not often addressed, since OB-GYN specialists are not usually found in children's hospitals, and those in adult facilities lack training in thalassemia care. Education and collaboration among specialists is needed in this area for all parties involved.

Employment Opportunities

Many adults with thalassemia are faced with employment challenges. Disclosure and getting time off for treatment are primary issues. A solution for this is evening and weekend transfusion clinics. Changing jobs and self-employment can be daunting for an adult thalassemic due to insurance issues. Solving these issues would require structural changes in our society, government, and insurance coverage.

Medical Insurance

Pre-existing condition clauses, waiting periods, and lifetime caps are especially challenging to adult patients and reflect a social problem that must be addressed. The medical expenses that patients accrue can be grandiose, depending on the type of insurance and co-payments they have. Highly trained social workers can be an asset in efforts to educate patients on coverage and navigating the system.

Death, Loss, and Mortality

A difficult part of being involved in the thalassemia community is the inevitable loss that one experiences. The grief caused by losing friends who share the same disease is insurmountable. Another indescribable tragedy is when two or more siblings have thalassemia, and one dies. The loss of a friend or a sibling is coupled with many feelings, including guilt, blame, and fear. Patients do not frequently discuss their own mortality. Possibly, noncompliance is simply a form of denial until a patients becomes severely ill due to complications from iron overload. Support groups; education on services such as the durable power of attorney; and psychosocial and therapeutic interventions must be made available.

thalassaemia blood transfusion

Adult Care

In the next part of this article, a look at adult care and compliance will be the focus. Care includes blood transfusions, Desferal therapy, doctor appointments, taking medications, medically related phone calls, and travel time. Six patients were asked to keep track of the time it took for all of their thalassemia care for one month. The average time these six patients spent on care was 271 hours. Beyond the "basic care," two adults had diabetes, with time for care totaling 755 hours. This included testing blood sugar and wearing an insulin pump. Two patients underwent hospital admissions which totaled 76 hours. The percentage of time for each care category is as follows:

Desferal = 91%
Transfusions = 5%
Appointments = 1%
Phone = 1%
Travel = 1%
Taking medicine = 1%

chelation agent

Pediatric versus Adult Settings - Pros and Cons

All of the specialty centers for thalassemia in the United States are pediatric hospitals. Having expert hematologists who specialize in thalassemia is the greatest benefit of being in a pediatric setting. Other benefits include participating in new medical research, new treatments, and the knowledge of comprehensive care. Exposure to other patients who share the same experiences lends itself to the building of support networks, both in the hospital and within the community.

The primary drawback of adult care in a pediatric setting is facilities' inability to deal with medical challenges that adult patients confront. Fertility, osteoporosis, and adult pain management are not often addressed in the pediatric setting. Another drawback is that not all medical specialties in the pediatric hospital provide adult care. Emergency room care, cardiology, and radiology are a few common examples of this. As a result, adult care becomes decentralized, and comprehensive care is compromised. Adults may see a pediatric hematologist but go elsewhere for all other services. It is difficult to find physicians who have an understanding of all aspects of thalassemia and how it pertains to their specialty. Communication and collaboration among providers is a challenge when care is decentralized.

Other challenges adults face in pediatric settings include being recognized as a patient with the same rights as a pediatric patient. There is a lack of privacy if and when admitted, and members of the medical staff often do not acknowledge that the adult is a capable of being an integral member of the medical team. If adults are proactive and speak up, they are often labeled as difficult patients.

In adult settings, providers are well trained in adult needs versus pediatric needs. Admissions are not an issue, and patients can be seen by all Services. Many providers are willing to communicate with a patient's thalassemia specialist to provide adequate care to the patient, as well as to assure their participation in new treatments and potential research studies. However, for the most part, this is a challenge due to lack of time and resources in the medical field in general. Lack of communication among providers can compromise patients' care and potentially lower their lifespan.

The transition from pediatric to adult care can be a challenge. It is a medical shift and a cultural shift, because pediatric practice differs greatly from adult practice. As mentioned before, providers lack knowledge of thalassemia, so collaboration with pediatric thalassemia specialists is vital both to provide quality care and keep abreast of new treatments and research.

thalassaemia family

I spoke with the thalassemics involved in the time study. I asked them what their primary challenges were as a child and what they are as an adult. They were candid in their responses, which are representative of the thalassemia patient community. As children, it was very difficult to learn about and understand thalassemia. It is a complex disease with high-maintenance treatments. All parents would agree how difficult it is to explain to small children why they have to be taken to a hospital on a regular basis and why they have to be stuck with a needle nightly to infuse medicine.

Unfortunately, many children are not taught about thalassemia in a developmentally appropriate way. Providers and parents often speak over their heads, and in an effort to protect them, information is often kept from them. This is detrimental to the building of trust, involvement in care, compliance, and coping. Children quickly learn that they are different and that something is wrong with them. Honest communication is crucial to their understanding and ability to deal with thalassemia throughout their lives. A child life specialist can be an asset to early intervention. Child life specialists can teach children what thalassemia is at their developmental level. The specialists can facilitate medical play and teaching so a child can gain understanding and mastery over thalassemia. By talking about thalassemia early on, children are given the words that they will always need to explain thalassemia to others. Learning how to deal with people when they learn about thalassemia is another challenge that applies to all patients and families. Throughout life, they run into barriers-whether at school, at work, at a doctor's office, in friendships, or in later, intimate relationships.

Other obstacles mentioned were overcoming the fear of needles as a child and absence from school, and later, work. Maintaining necessary energy and drive to continue to stay on top of medical issues and treatment, as well as constant preventative care, is another challenge. The time it takes to care for oneself is exorbitant - thalassemia never ends; there is no break from it, and therefore, it is no surprise that compliance is an issue. Insurance crises can prove to be as challenging as medical crises. Sadly, learning about mortality and life expectancy is another trial. One adult thalassemic said she felt like the worst part of having thalassemia was "dying slowly and periodically having another organ die or become impaired." More difficult to live with than scar tissue and scarred veins are the psychological scars of being reminded daily of one's own mortality throughout one's entire life.

Improving adult care must be addressed by all providers of thalassemia care, both in pediatric and adult settings. Optimal care for adults must be placed as a priority and will require hard work, commitment, and collaboration by all involved. Suggestions for improvement include centralizing care in pediatric settings. This would require collaboration and agreements with upper hospital management and insurance companies, thus lobbying and government mandates may be necessary. In order to centralize care in a pediatric setting, there must be a team of adult doctors in all the necessary specialties, as well as psychosocial services. These specialists will work alongside the thalassemia specialist. Education of all hospital staff regarding adult care would play a primary role in appropriate integration of adults into a pediatric setting. Evening and Saturday transfusion clinics and efficient registration systems would eliminate countless obstacles, such as time and employment issues.

To improve adult settings, a satellite hospital could be designated near a pediatric specialty center. Adult doctors would have to receive specific training in thalassemia in order to provide quality comprehensive care. Routine meetings and collaboration with the pediatric center would be required. Until there is more education in medical school for adult hematologists, improvement in adult settings appears to be more challenging than implementing an adult program in a pediatric setting.

There is no doubt that the brilliant minds of the providers who have worked so hard to keep patients alive until adulthood will be able to collaborate to improve the care of adults in both pediatric and adult settings. Optimal adult care will eliminate unnecessary challenges and will improve quality of life for this generation and many to come.


Tatacara Penganjuran Kempen Pendermaan Darah

Pihak Pusat Darah Negara (PDN) sentiasa berusaha untuk meningkatkan jumlah kutipan darah untuk dibekalkan kepada hospital-hospital yang memerlukan darah. Oleh itu banyak program-program pendermaan darah dirancang serta dilaksanakan oleh PDN. Untuk menganjurkan program pendermaan darah yang berjaya dan berkesan, beberap perkara perlu diberi perhatian:

1.1. Jumlah minima penderma adalah 40 orang. 

2.2. Tempat pendermaan:
Saiz seluas 20 kaki x 20 kaki minima (bergantung kepada jumlah penderma)
Selesa, berhawa dingin atau berkipas, terang, mempunyai peredaran udara yang baik dan jauh daripada   gangguan bunyi bising. Elakkan tempat yang panas, tersorok, berhabuk dan yang perlu menaiki tangga yang tinggi. Mempunyai kemudahan meletak kenderaan dan memuat-turun barang. 

3.3. Peralatan:
Peralatan yang digunakan untuk proses pendermaan darah akan dibawa oleh pihak PDN. Jamuan ringan (refreshment) selepas pendermaan akan disediakan oleh pihak PDN.

4.4. Pihak penganjur diminta agar dapat menyediakan:
Sekurang-kurangnya 8 buah meja dan 20 buah kerusi untuk kegunaan penderma dan  kakitangan bertugas (bergantung kepada jumlah penderma) Kipas – sekiranya tempat yang disediakan tidak berhawa dingin atau ditempat terbuka. Bekalan elektrik dan air bersih.

5.5. Publisiti 
Poster dan pamphlet untuk publisiti kempen pendermaan darah ini akan dibekalkan oleh pihak PDN. Pihak penganjur disyorkan untuk mengumumkan kepada orang ramai mengenai kempen menderma darah yang akan dijalankan ini dengan menggunakan poster yang dibekalkan selewat-lewatnya seminggu sebelum tarikh kempen. Pada hari pendermaan, pengumuman secara lisan atau dengan bantuan system makluman awam (PA system) bolehlah dilakukan untuk mengingatkan orang ramai tentang kempen yang sedang diadakan.

Hakcipta Terpelihara © 2009 - Pusat Darah Negara





‘Blood money’....???

Monday August 9, 2010

Red Crescent in protest over ‘blood money’

JOHOR BARU: Red Crescent Malaysia’s Johor Baru Chapter will stop organising blood donation campaigns in protest against a new management policy adopted by the Sultanah Aminah Hospital.

Its chairman Chong Ah Ng claimed that under the new policy, private hospitals that needed blood had to purchase it from the hospital.

“In the past 20 years, we would usually hand over the blood that we collected from our campaigns to the hospital, which would then distribute them to other hospitals for free.

“But now, all the packets of donated blood are stored at the hospital and other hospitals have to pay for this,” he told reporters after its last blood donation campaign in Sutera Mall here yesterday.

Chong said the new policy had led to private hospitals charging patients between RM200 and RM300 for a pint of blood.

“We have brought the matter up with the management at Sultanah Aminah but the person in charge refused to attend to our calls or appointments,” he claimed.

“We hoped the matter will be resolved as soon as possible as it is unfair to those who are in dire need of blood,” said Chong, adding that it had sought the assistance of Gelang Patah MP Tan Ah Eng to bring the matter up with the Health Ministry.

However, state Health Department director Dr Mohd Khairi Yaakub refuted such claims, adding that the hospital did not “sell” the donated blood.

“The hospital only charges a fee to cover the costs of laboratory work and blood screening.

“For example, according to a fixed schedule, the hospital will charge about RM30 for a pint of blood,” he said, adding that the policy had been in place for a few years.

Copyright © 1995-2010 Star Publications (M) Bhd (Co No 10894-D)



Kami di STM mengusulkan untuk pesakit-pesakit Thalas untuk berkongsi rasa dan pengalaman kehidupan bersama kami di sini. Seperti semua tahu, pejalanan hidup adalah guru terbaik dalam memberi panduan. Dari pengalaman kita belajar untuk merangkak, melangkah, kemudiannya berlari. Mungkin kita jatuh beberapa kali. Namun setiap kali kita jatuh, kita bangkit dan bangun. Belajar dan berlari lagi. 

Setiap derap langkah diambil memberi pelbagai warna dalam kehidupan. Ada yang suka, ada yang duka, ada yang gembira. Biar apa warna sekali pun ia tetap terpahat dalam memori dan menjadi relati kehidupan kita hari ini. Dan warna-warna itulah yang mencipta diri kita kini. Itulah warna kehidupan kita.

Baik atau buruk bukan ukuran yang nyata. Pengalaman mengajar kita menjadi insan yang lebih sempurna. Setiap insan ada punya kelemahan, ada punya kesilapan. Namun anugerah yang Esa memberi kita kelebihan untuk belajar dan mencuba dan terus mencuba. Agar kita tidak melakukan kesilapan yang sama berulang kali. Kemudiannya bangkit, bangun dan berlari dengan lebih sempurna

Dan di sini anda diminta untuk melakarkan wajah pejalanan kehidupan anda sebagai pesakit Thalas atau sebagai keluarga Thalas untuk dikongsi bersama. Semoga coretan itu nanti menjadi panduan, sempadan dan inspirasi pada insan-insan yang lain dan generasi Thalas seterusnya. Dengan harapan mereka akan mempunyai panduan dan keyakinan yang tinggi. Demi kualiti hidup yang lebih baik untuk mereka dan keluarga yang tersayang.

Tidak mengapa kita tidak mempunyai wang dan harta berjuta. Namun kita punya hati putih telus. Amal jariah untuk Thalas masih tersedia, dengan berkongsi pengalaman dan rasa dengan lain-lain Thalas atau bukan Thalas ianya tetap mendapat balasan yang dijanjikanNya. Insyallah. Selamat beramal dan berkongsi rasa.... 

Love N Peace


Komen & Maklumbalas Anda

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