Living with Thalassemia

Since thalassemia is a chronic illness, the key to successful management of the disease is the integration of psychological wellness and counseling along with medical care.

Health care providers will encounter many complex personal and cultural issues when caring for thalassemia patients and their families. These are our experiences.

In this section you will find information on what to expect from your child's development, what to expect as a patient and ways in which you can ease transitions.

Life Stages: Infancy

 

Most families find out about their child's diagnosis shortly after birth. Even for families who may be familiar with thalassemia, this can be a difficult time. Adjusting to a new diagnosis can be challenging. You will be getting lots of new information and meeting lots of new health care providers. Expect your child to reach normal developmental milestones.

 

What you can do:

• Use you support network.Talk with family members and friends who have been helpful in the past. You may even want to bring in part of your support network when you see the doctor. If you don't know someone with your child's disease, think about asking your doctor's office to introduce you to another family.
• It's okay to ask questions and to ask them more than once. Try to pay attention to how you manage information; some families prefer information in writing, some families prefer to hear less information at once. If you know your preference, share it with your health care providers.
• Take care of yourself. Your ability to take care of your child is directly related to how you are doing. Take time to relax, participate in fun activities, and enjoy the new member of your family.

  

Life Stages: Toddlerhood

Children at this age are testing their environment for what they can do and testing their parents for what they are allowed to do. Children are not able to fully understand why they need to come to the hospital and why things that are uncomfortable are being done to them (needle sticks, exams). You may find increased resistance to invasive procedures such as blood draws or transfusions. If your child is on chronic transfusions, you may begin using Desferal at home during this time. It can be very difficult to stick your own child, both physically and emotionally.

 

If your child attends day care, you will need to think about what types of information you feel comfortable sharing about your child’s disease.

What you can do: 

• Medical play can assist your child to master medical procedures. Have a child life specialist or psychosocial provider at your hospital work with your child around medical play. It can also be helpful to have a toy medical bag at home.
• During procedures or IV’s, help your child manage the stress by distracting them with books, songs or toys.
• Speak with your health care providers about what you should share with day care centers, baby sitters, etc. 
• Continue to expect age appropriate behavior from your child and don’t be afraid to set limits.

Life Stages: School Years

Children during these years look for activities they are good at, math, reading, sports, art, helping around the house, etc. This need for a sense of mastery also extends to a child’s illness. Children will want to have more control over procedures and ask many more questions about why procedures and tests are being conducted. School age children being to look more towards their peers to assess their competence in academic and social arenas. Children will begin to take notice more that their peers do not come to the hospital like they do and will ask questions about this. As children get older, their cognitive development changes and they have a different understanding of themselves and their environment. You may get asked the same questions many times.

What you can do:

• Help your child find something that they are good at, encourage their interests.
• Try to give your child more choices, and therefore control, about their medical care. For example, give your child a choice about where the IV should be placed.
• Listen and take seriously your child’s questions about their illness and medical care. Answer questions as clearly and honestly as you can. When you are unsure of the answer or how to best talk with your child about a concern, talk to your health care provider.

Life Stages: Adolescence

Many parents and patients say that the teen years are the most difficult time for families. Families struggle with the shift of responsibility and control over the disease, academic progress, and social activities. As teens take more responsibility for their illness, compliance may become an issue. Teenagers spend less time at home, are more oriented toward their peers, and are motivated to be like their peers. All of these factors can lead towards non-compliant behavior. Adolescents begin to think more like adults and to understand adult concepts of illness and mortality. While teens can cognitively understand abstract concepts, many feel protected from negative consequences; this can lead towards risk-taking behaviors, including experimenting with drugs and alcohol, sex and aggressive behavior.

What you can do as a parent:

• Continue to negotiate with your child around disease responsibility.
• Have your teen start to develop independent relationships with his or her health care providers; this can help you negotiate the transfer of care to your child and give him/her a private and safe place to voice concerns.
• Get support and information from other parents going through this difficult time.
• Do not hesitate to ask for your family to meet with a psychosocial provider to help you manage these years.

What you can do as a patient:

• Try to find people to talk to who you think can listen to your questions or concerns about your disease. You may want to try friends, parents, relatives, health care providers, and other patients.
• Contact TAG (Thalassemia Action Group) at (800)935-0024 or (800)522-7222 (e-mail: ncaf@aol.com). This is a national peer support network of patients that provide information on thalassemia.
• Subscribe to a listserv (thalassemia@listbot.com). Join a virtual community of thalassemia patients or find a pen-pal.

Life Stages: Adulthood

The responsibilities of adult life can get even more complicated in the presence of a chronic illness. Adults face the challenge of maintaining relationships, work, medical insurance, and managing an often complicated medical disease. For some, reaching adulthood may also mean a change in their system of medical care from a pediatric setting to an adult setting. Compliance with medical management continues to be an issue as patients balance the issues of the use of invasive medical procedures and quality of life. Please read Proposal: Living as an Adult in Pediatric World in our Patient Forum Section

What you can do as an adult:

• Continue to get help and support from others, including your health care professionals, family and friends.
• If you have not already, contact the Thalassemia Action Group for support and to keep updated on new advances in thalassemia care. Phone: (800)935-0024 or (800)522-7222. Email: ncaf@aol.com.
• Work with a social worker or a legal action group to ensure that you know your rights in employment and insurance situations.

For further info please visit : Northern California Comprehensive Thalassemia Center

Contact Us

Northern California Comprehensive Thalassemia Center

Children's Hospital Oakland

Department of Hematology/Oncology

747 52nd Street, Oakland, CA 94609

Phone: 510-428-3885 x 5427

Email: info@thalassemia.com

Please note that due to liability issues, and in order to preserve the individual doctor-patient relationship, we cannot give medical advice on specific cases over the internet. Your physician can contact us directly if necessary.

Thank You Allah

Maher Zain

I was so far from you

Yet to me you were always so close

I wandered lost in the dark

I closed my eyes toward the signs

You put in my way

I walked everyday

Further and further away from you

Ooooo Allah, you brought me home

I thank You with every breath I take.

Alhamdulillah, Elhamdulillah

All praises to Allah, All praises to Allah

Alhamdulillah, Elhamdulillah

All praises to Allah, All praises to Allah.

I never thought about

All the things you have given to me

I never thanked you once

I was too proud to see the truth

And prostrate to you

Until I took the first step

And that's when you opened the doors for me

Now Allah, I realized what I was missing

By being far from you.

Alhamdulillah, Elhamdulillah

All praises to Allah, All praises to Allah

Alhamdulillah, Elhamdulillah

All praises to Allah, All praises to Allah.

Allah, I wanna thank You

I wanna thank you for all the things that you've done

You've done for me through all my years I've been lost

You guided me from all the ways that were wrong

And did you give me hope

O Allah, I wanna thank you

I wanna thank You for all the things that you've done

You've done for me through all my years I've been lost

You guided me from all the ways that were wrong

I wanna thank You for bringing me home

Alhamdulillah, Elhamdulillah

All praises to Allah, All praises to Allah

Alhamdulillah, Elhamdulillah

All praises to Allah, All praises to Allah

Artist: Maher Zain

Album: Thank You Allah

Copyright: Awakening Records 2009

Dapatkan Mesej Bergambar di Sini




Dapatkan Mesej Bergambar di Sini

Two beneficiaries receive RM86,800 each from charity run proceeds
Friday, 3 December

 

 

KOTA KINABALU: The recent 10th 7K Sunset Charity Run, which attracted the biggest participation from organizations and individuals, collected RM173,607.02.

About 12,000 7K T-shirts were distributed to participants.

Disclosing this yesterday, Sutera Harbour Resort director cum co-founder and initiator of the charity run Foo Kia Inn said the the event was held on July 10 this year.

The proceeds from the event were distributed to the two beneficiaries, namely Special Olympics Sabah and Sabah Thalassaemia Society with RM86,803.51 each.

“The run which was initiated in 2000 was aimed at bringing the community of Kota Kinabalu together in the spirit of giving while promoting a healthier lifestyle in a fun and exciting way,” he said during the cheque presentation to the beneficiaries at Sutera Harbour Golf and Country Club here yesterday.

He hoped to seek more participation and involvement of various organizations and individuals for the 11th Charity Run which is scheduled for July 2011.

Foo also thanked all sponsors for their generous contributions and to all participants who made the run a big success.

Present to witness the cheque presentation was Assistant Minister of Youth and Sports Datuk Jahid Jahim who represented Minister Datuk Peter Pang.

Speaking on behalf of the State Government, Jahid thanked the sponsors, Non-Governmental Organizations (NGOs) and those involved in the charity run.

 

 

Copyright 2010 BorneoPost Online. All Rights Reserved.

 

 

THE BORNEO POST : Treatment of Thalassaemia Patients in Sabah Improves

Posted on November 28, 2010, Sunday

KOTA KINABALU: Treatments for Thalassaemia patients in Sabah have shown major improvements under the comprehensive strategy for Thalassaemia care since 2005.

“Our next step in Sabah is to set up a comprehensive and integrated Thalassaemia Treatment Centre to house all the Thalasaemia care services under one roof,” said Deputy Minister of Health Datuk Rosnah Abdul Rashid Shirlin.

Rosnah pointed out that Sabah has the highest carrier rate of Beta Thalassaemia, estimated at seven per cent, which is double the national rate.

“There are 1,284 transfusion dependent Thalassaemia patients in Sabah and 254 are receiving treatment in Sabah Women and Children’s Hospital.

“A well designed One Stop Centre which meets the special needs of the patients is needed in order to provide comfortable and homely environment to the patients.

“Instead of moving the patients to the various services, we should bring all the services to the patients,” said Rosnah here yesterday when launching the ‘Toy Donation Campaign’ for the World’s Children’s Day Celebration in Likas Hospital.

She also hoped that the integrated centre could boost researches on the disease besides contributing to new information on how to manage the condition of patients.

Her speech was delivered by Assistant Minister of Resource Development and Information Technology cum Karambunai assemblywoman Datuk Jainab Ahmad Ayid.

Besides Thalassaemia, mortality among the new born babies in Sabah was also a concern of the Health Ministry.

“The ministry will be supporting the development and strengthening of the Neonatal Intensive Care in Sabah.

“We want to provide the best for our children’s health care and we ensure that no child is left behind,” said Rosnah.

Copyright 2010 BorneoPost Online. All Rights Reserved.

 

 

"..According to the data from the National Thalassaemia Registry, currently there are 4,768 thalassaemia patients registered in Malaysia. Although some may have mild disease and are not detected or recorded by the registry, among the recorded cases, 2,800 patients require regular blood transfusion......" The Star, 6th June 2010

" GIVE LIFE..... GIVE LOVE....., donate your blood today.... "

TIF’s educational publications provide concise, up-to-date information on all aspects of thalassaemia, from prevention to clinical management. All our publications are available as PDF files completely free of charge. Hard copies and CD-ROM versions can be ordered directly from TIF.

The translation of TIF’s educational publications into various languages continues in 2010. All publications translated books are or will become available on TIF’s web-site: www.thalassaemia.org.cy




Learn about your rights as a patient!



 Patients’ Rights (2007) by Eleftheriou A

Click above link to read the PDF files

Beta Thalassemia (A Genetic Blood Disorder) - Minor and Major, Diagnosis, and Treatment Information on MedicineNet.com

MedicineNet.com

Beta Thalassemia

•What are the thalassemias?

•What is beta thalassemia?

•What is the difference between thalassemia minor and major?

•What is Mediterranean anemia?

•What is the genetic pattern of inheritance of beta thalassemia?

•The diagnosis of thalassemia major and minor

•The treatment of thalassemia major

What are the thalassemias?

The thalassemias are a group of genetic (inherited) blood disorders that share in common one feature, the defective production of hemoglobin, the protein that enables red blood cells to carry oxygen (and carbon dioxide). There are many different disorders with defective hemoglobin synthesis and, hence, many types of thalassemia.

What is beta thalassemia?

The most familiar type of thalassemia is beta thalassemia. It involves decreased production of normal adult hemoglobin (Hb A), the predominant type of hemoglobin from soon after birth until death. (All hemoglobin consists of two parts: heme and globin). The globin part of Hb A has 4 protein sections called polypeptide chains. Two of these chains are identical and are designated the alpha chains. The other two chains are also identical to one another but differ from the alpha chains and are termed the beta chains. In persons with beta thalassemia, there is reduced or absent production of beta globin chains.

What is the difference between thalassemia minor and major?

There are two forms of beta thalassemia. They are thalassemia minor and thalassemia major (which is also called Cooley's anemia).

Thalassemia minor: The individual with thalassemia minor has only one copy of the beta thalassemia gene (together with one perfectly normal beta-chain gene). The person is said to be heterozygous for beta thalassemia.

Persons with thalassemia minor have (at most) mild anemia (with slight lowering of the hemoglobin level in the blood). This situation can very closely resemble that with mild iron-deficiency anemia. However, persons with thalassemia minor have a normal blood iron level (unless they have are iron deficient for other reasons). No treatment is necessary for thalassemia minor. In particular, iron is neither necessary nor advised.

Thalassemia major (Cooley's anemia): The child born with thalassemia major has two genes for beta thalassemia and no normal beta-chain gene. The child is homozygous for beta thalassemia. This causes a striking deficiency in beta chain production and in the production of Hb A. Thalassemia major is, therefore, a serious disease

.

The clinical picture associated with thalassemia major was first described in 1925 by the American pediatrician Thomas Cooley. Hence, the name Cooley's anemia in his honor.

At birth the baby with thalassemia major seems entirely normal. This is because the predominant hemoglobin at birth is still fetal hemoglobin (Hb F). Hb F has two alpha chains (like Hb A) and two gamma chains (unlike Hb A). It has no beta chains so the baby is protected at birth from the effects of thalassemia major.

Anemia begins to develop within the first months after birth. It becomes progressively more and more severe. The infant fails to thrive (to grow normally) and often has problems feeding (due to easy fatigue from lack of oxygen, with the profound anemia), bouts of fever (due to infections to which the severe anemia predisposes the child) and diarrhea and other intestinal problems.

What is Mediterranean anemia?

The gene for beta thalassemia is not evenly distributed among peoples. It is, for example, relatively more frequent in people of Italian and Greek origin, both of which are peoples from the Mediterranean. Because of this, thalassemia major has been called Mediterranean anemia.

The name thalassemia was coined at the University of Rochester in upstate New York by the Nobel Prize-winning pathologist George Whipple and the professor of pediatrics William Bradford from the Greek thalassa for sea and -emia, meaning the blood. Thalassemia means "sea in the blood." But for the Greeks, the sea was the Mediterranean, so thalassemia also conveys the idea of the Mediterrranean in the blood.

The reason that the gene for beta thalassemia is relatively common, for example, among people of Italian and Greek origin is that parts of Italy and Greece were once full of malaria. The presence of thalassemia minor (like sickle cell trait in Africa) afforded protection against malaria, and therefore, this gene thrived.

What is the genetic pattern of inheritance of beta thalassemia?

The pattern of genetic transmission of beta thalassemia (and sickle cell disease) was deciphered by James V. Neel when he was at the University of Rochester (he later went to Michigan). Dr. Neel recognized that the parents of children with thalassemia major had thalassemia minor with one beta thalassemia gene. When these parents had children, they have a 25% chance of having a thalassemia major child (with both genes for beta thalassemia), a 50% chance of having children with thalassemia minor (with only one gene for beta thalassemia), and a 25% chance of having a child without thalassemia major or minor (with both genes for normal beta chains). This form of inheritance is medically referred to as an autosomal recessive pattern.

The diagnosis of thalassemia major and minor

Persons with thalassemias have smaller sized red blood cells than normals as well as low red blood cell counts (anemia). Thalassemia major and thalassemia minor can now be diagnosed (and distinguished from one another) not only by conventional clinical and blood testing, but also by molecular medical tests. These tests permit accurate diagnosis to be made at any time, even before birth (in fact, well before the beta chain machinery is fired up to make beta chains for hemoglobin).

The treatment of thalassemia major

Infants with thalassemia major are well at birth because of a special form of hemoglobin present in the fetus and newborn. Eventually, however, this hemoglobin is replaced by defective hemoglobin. Symptoms emerge late in the first year of life. The child develops pale skin, irritability, growth retardation, swelling of the abdomen due to enlargement of the liver and spleen (hepatosplenomegaly) with jaundice. This is associated with severe anemia with rupture of the red blood cells (hemolytic anemia). The child with thalassemia major becomes dependent on blood transfusions and, although they do help, they create further problems including iron overload. Folic acid supplementation is often given. At this time, there is only treatment for relieving the symptoms of the illness for thalassemia major. Gene therapy remains a potential treatment for the future.

The long-term hope is that thalassemia major will be cured by insertion of the normal beta-chain gene through gene therapy or by another modality of molecular medicine.

Beta Thalassemia At A Glance

•Thalassemias are inherited blood disorders.

•Thalassemia patients make defective hemoglobin.

•There are two forms of beta thalassemia: thalassemia minor and thalassemia major (also called Cooley's anemia).

•Beta thalassemia is more frequent in people of Italian and Greek origin.

Reference:

 Harrison's Principles of Internal Medicine,
McGraw-Hill, edited by Eugene Braunwald,
et. al., 2001.

Additional information is also available through the following organizations:

The National Institutes of Health (NIH)

Cellular Hematology Scientific Research Group

Blood Diseases Program

National Heart, Lung, and Blood Institute

6701 Rockledge Drive, MSC-7950

Bethesda, MD 20892-7950. USA

Phone: 301-435-0050

Fax: 301-480-0868

Cooley's Anemia Foundation,

129-09 26th Avenue - #203

Flushing, NY 11354, USA

Phone: 800-522-7222

Fax: 718-321-3340

http://www.cooleysanemia.org/

Thalassemia International Federation

Philippou Hadjigerogiou No.1- Flat 8

P.O. Box 8807

Nicosia, Cyprus

Phone: (357) 2-319129

Fax: (357) 2-314552

Last Editorial Review: 12/11/2005

©1996-2010 MedicineNet, Inc. All rights reserved.

MedicineNet does not provide medical advice, diagnosis or treatment.

Online edition of India's National Newspaper
Thursday, Sep 16, 2010


Genetic therapy cures thalassaemia

R. PRASAD


Though the patient has not required any blood transfusion for the last 2 years, risk of cancer has to be continuously monitored

 Photo: Mohammed Yousuf

Treatment: Frequent blood transfusion is needed
to treat anaemia in patients with thalassaemia.

 

Nearly 10,000 children born every year in India suffer from thalassaemia major, an inherited disease that is caused by an abnormality in haemoglobin (an oxygen-carrying protein) production. This results in ineffective production of red blood cells, thus causing anaemia. This necessitates regular blood transfusion. It not only affects the quality of life of children but also cuts short their life span.

A paper published online in Nature today (Sept 16) reports the first case where gene therapy on an 18-year-old teenager has successfully cured the disease.

Transfusion free

The therapy was performed three years ago in June and the person has not required any blood transfusion since June 2008, a year after the transplantation was conducted. However, the patient remains mildly anaemic. The frequency of transfusion requirements was 2-3 red blood packs given once a month before the therapy.

“At present, approximately three years post-transplantation, the biological and clinical evolution is remarkable, and the patient's quality of life is good,” note the authors.

Since no red blood transfusion was required since June 2008, the authors consider this case as a “clinical success.”

The procedure

First the patient's diseased haematopoietic stem cells taken from the bone marrow were separated. They then transferred a functional beta-globin gene capable of producing red blood cells into the haematopoietic stem cells. The beta-globin gene was introduced into the patient's haematopoietic stem cells using a viral vector (HIV-derived lentiviral vector).

With the gene successfully transferred, the patient was subjected to a high dose of chemotherapy before transplanting the genetically modified haematopoietic stem cells. High dose chemotherapy treatment ensured that all diseased stem cells were destroyed. This ensured that the effects of the genetically modified stem cells introduced were not diluted and hence the outcome not compromised.

Destroying the diseased stem cells through chemotherapy prior to undertaking bone marrow transplantation to treat thalassaemia patients is routine.

Following the treatment, the haematopoietic stem cells containing the modified gene started to produce healthy blood cells.

According to a News and Views piece in the same issue of Nature, the levels of genetically modified cells rose from less than 2 per cent in the first few months to 11 per cent at 33 months after transplantation.

Need for caution

However, there is great need for caution. The genetically modified stem cells appear to have altered the expression of a gene that controls the behaviour of blood stem cells, causing a mild, benign expansion of these cells.

While the effect seen in the patient may be responsible for much of the therapeutic benefit, the possibility that the behaviour is a prelude to cancer cannot be completely ruled out.

The paper notes that the increased levels of a particular protein (HMGA2) that is implicated as a potential cancer stimulus was present in only half of all the haematopoietic cells circulating in the patient's blood.

Based on this fact, the authors note that “there is no evidence of a malignant or pre-malignant state” in the patient.

Earlier experiments

It must be remembered that earlier experiments of introducing genetically modified haematopoietic stem cells led to cancer. The first time it was tested about ten years ago, a murine leukaemia virus vector was used. Several patients developed cancer.

In a later trial, a retroviral vector was used to introduce the genetically modified beta-globin gene. But the result was the same — patients developed cancer.

Though HIV-derived lentiviral vector was used in this case, there has been some benign proliferation of cells that have a protein which is often implicated in cancer.

Hence many more trials and more investigations are required before genetic therapy for curing thalassaemia can be considered as a viable alternative.

The advantage

The advantage with genetic therapy is that the therapeutic gene (beta-globin gene) is made in the laboratory and inserted into the vector and transplanted into the body.

This makes redundant the need to look out for a donor, leave alone donors with a perfect tissue match as the recipient's, as is the case with bone marrow transplantation.

Though stem cells harvested from cord blood do not require perfect tissue match, a perfect tissue match, nevertheless, vastly improves the chances of the transplant's success.

Copyright © 2010, The Hindu

Motivations Of Life
An Nisa Editor: naadherah


The most difficult person to FACE in life is yourself.


A GRATEFUL heart is the cure for loneliness.


Do not judge the FUTURE by the past.


Never stop reaching for the GOAL in front.


Hold on to your BELIEF, then you will overcome difficulties.


TRIVIALITIES can accumulate to an important episode.


Kind DEEDS can bring good returns.


DREAM is our motivation in life.


WISDOM is to understand that the world is ever-changing.


SINCERITY is a natural spring of water.


Danger brings us TRUE friends.


SMILE is the first step of a new life.


So, go on with your life with a new spirit.


Everyday is a new day.

Artikel iluvislam.com



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Motivations Of Life iluvislam.com + discover the beauty of islam



'Life is Colourfull' Design by Zulhafidz, Designer iLuvislam.com.

Hidup ini berwarna-warni. Ada kala warnanya cerah dan menenangkan, adakala warnanya malap dan menyesakkan.

Warna-warni kehidupan inilah yang membuatkan kita dapat hidup sebagai seorang manusia normal yang tidak monotone, tidak sentiasa menang dan tidak sentiasa kalah.

Tidak sentiasa lemah dan tidak sentiasa kuat.

Warna-warni dalam kehidupan itu adalah lambang kehebatan zat Allah yang maha menciptakan.

Supaya kita sedar bahawa hidup kita ini tidak selalu berjalan menurut kemahuan kita, ada kuasa luar yang mengatur perjalanan hidup kita dan mengatasi aturan-aturan yang kita buat.

Tidak akan mungkin ada orang yang mampu menciptakan suasana senja yang berbeza-beza, atau pagi yang sentiasa ada kelainan.

Kadangkala suasana itu dingin sejuk dan adakala ia panas membakar.

Alam ini adalah pameran Allah yang terpampang depan mata kita.

Adakah kita masih tidak mahu melihat setelah kita merasakan nikmatnya berada di atas muka bumi ini?

Kita melalui beberapa fasa dalam kehidupan kita.

Dalam setiap jalan yang kita lalui, pasti ada sesuatu yang baru yang kita perolehi.

Terlalu banyak 'sesuatu' yang belum kita terokai dan terlalu banyak jalan yang belum kita lalui.

Boleh jadi dan sememangnya kita takkan mampu menerokai segala-galanya dalam sela masa umur yang diberikan di dunia ini.

Dalam setiap fenomena yang berlaku dalam kehidupan kita pasti ada hikmahnya, dan ada warna-warninya.

- Petikan ZulYunus.Com

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"Saya ingin menonton filem The Social Network.....!!"

Siapa yang tidak mengenali Mark Zuckerberg, pengasas Facebook yang merubah dunia komunikasi dengan jaringan sosial Facebook. Cuma segelitir dari kita mempu melakukan revolosi dan Zukensberg salah seorang darinya. Ini menjadi kannya sebagai seorang billionaire termuda pada masa kini.

Kejayaan yang ditempanya bukan dengan cara mudah, ia juga penuh dengan rintangan. Kejayaan jaringan sosial Facebook semenjak 2003 menemukannya dengan 500 juta kenalan baru dan dalam masa yang sama juga melahirkan musuh-musuh termasuk dari kalangan teman baiknya.

Filem The Social Network yang diarahkan oleh David Fincher dan diterbitkan oleh Scott Rudin, Dana Brunetti, Michael De Luca, and Ceán Chaffin adalah berdasarkan buku "The Accidental Billionaires" oleh Ben Mezrich. Filem ini dilakonkan oleh Jesse Eisenberg, Andrew Garfield, Justin Timberlake, Armie Hammer dan Josh Pence.

Lawati laman the social network

Thalassemia major is an inherited form of hemolytic anemia, characterized by red blood cell (hemoglobin) production abnormalities. This is the most severe form of anemia, and the oxygen depletion in the body becomes apparent within the first 6 months of life. If left untreated, death usually results within a few years. Note the small, pale (hypochromic), abnormally-shaped red blood cells associated with thalassemia major. The darker cells likely represent normal RBCs from a blood transfusion.

Thalassemia minor is an inherited form of hemolytic anemia that is less severe than thalassemia major. This blood smear from an individual with thalassemia shows small (microcytic), pale (hypochromic), variously-shaped (poikilocytosis) red blood cells. These small red blood cells (RBCs) are able to carry less oxygen than normal RBCs.

Extract from Health All Refer.com

DAY 30 AUGUST 2010, 08:34

Dari sesawang PMR(Pusat Maklumat Rakyat)

http://pmr.penerangan.gov.my/index.php?option=com_content&view=article&id=517%3Adarah-tali-pusat&catid=200%3Ajenis-jenis-penyakit&Itemid=4

Tahukah anda bahawa darah tali pusat boleh menyelamatkan anda, keluarga anda ataupun ramai orang lain? Tahukah anda ianya bernilai puluhan ribu ringgit? Malah untuk mencari darah yang “matching” dengan darah anda boleh mencecah ratusan ribu ringgit?

Apakah darah tali pusat atau biasa disebut sebagai “Stem Cells”?

Darah tali pusat (cord blood) atau disebut “placental blood” adalah darah yang berada di dalam salur tali pusat dan uri yang keluar bersama sama dengan kelahiran bayi apabila tali pusat tersebut dipotong.Darah di dalam tali pusat bayi anda ini adalah sumber “stem cell” yang sangat bernilai yang secara genetiknya unik kepada bayi dan keluarga anda sahaja.

Apakah “stem cells?

Stem Cells ialah “master cells” kerana dari “sel master” inilah terbentuknya pelbagai tisu, organ dan sistem di dalam keseluruhan sistem tubuh kita. Sel stem mempunyai kemampuan untuk berubah menjadi kebanyakan jenis sel atau tisu dalam badan manusia yang lain. Stem cell yang ada di dalam “tali pusat” ini adalah “building blocks” kepada darah dan sistem pertahanan yang biasanya akan ditukarkan kepada:

Sel Darah Merah

Sel Darah Putih

Platelets (Sel yang akan memulihkan kecederaan)

Sel stem manusia boleh diprogram untuk menjadi sel otot, sel saraf, sel jantung dan sel darah. Oleh itu, ia boleh diguna untuk menjana sel-sel dan tisu-tisu gantian bagi merawat beberapa penyakit seperti Parkinson, Alzheimer, leukemia, angin ahmar, serangan jantung, kencing manis, sklerosis multipel, artritis reumatoid dan lumpuh saraf tunjang. Terdapat dua punca utama untuk sel stem:

Sel Stem Dewasa

Ia boleh diperoleh daripada janin yang gugur, darah tali pusat, sumsum tulang, darah dan otak. Sel-sel ini kurang mampu bertukar menjadi sel-sel khas berbanding dengan sel stem embrionik. Bilangannya agak kurang dan ada kalanya sukar untuk diperoleh (contohnya daripada bahagian otak dan retina mata).

Sel Stem Embrionik

Sel ini diperoleh daripada embrio yang terbentuk akibat persenyawaan luar tubuh (in-vitro fertilisation) ataupun melalui teknologi pengklonan (pemindahan nuklear sel somatik). Terdapat suatu perbahasan moral dan etika yang hangat dan berterusan tentang penggunaan embrio untuk penyelidikan.

Darah tali pusat merupakan punca yang agak baik untuk mendapat sel stem hemopoietik. Kira-kira 100ml boleh membina balik sistem hemopoietik dalam pesakit-pesakit yang kecil; biasanya kanak kanak.

Kebaikan transplantasi darah tali pusat berbanding dengan transplantasi sumsum tulang atau transplantasi darah periferal termasuk:

• Si penderma tidak perlu memasuki hospital untuk menjalani prosedur pendermaan. Pergerakan sel stem memerlukan ubat, misalnya cyclophosphamide dan G-CSF (untuk penderma darah periferal) dan ubat bius untuk penderma sumsum tulang.
• Darah tali pusat mempunyai risiko yang lebih rendah untuk menyebabkan penyakit graft vs host berbanding dengan transplantasi sumsum tulang dan darah tepi.
• Kutipan darah tali pusat juga disyorkan dalam situasi-situasi yang tertentu, misalnya:
• Seorang anak yang menghidap leukemia, supaya adanya bekalan sel stem sekiranya penyakitnya berulang dan dia memerlukan transplantasi.
• Seorang anak yang memerlukan transplantasi sel stem tetapi penderma yang sesuai tidak ditemui.

Soalan Lazim Mengenai Bank Tali Pusat/Cord Blood Bank

Apakah tujuan adanya bank darah tali pusat (cord blood bank)? Adakah kerajaan memberi kemudahan simpanan darah tali pusat?

Kini, tumpuan yang besar diberikan kepada usaha menemui dan memperkembangkan suatu punca tetap sel yang mampu menjana jenis-jenis sel yang pelbagai. Ia juga bertujuan mengelakkan masalah penolakan tisu transplantasi (pemindahan).

Sel-sel tersebut yang dikenali sebagai sel stem mempunyai kemampuan untuk berubah menjadi kebanyakan jenis sel atau tisu dalam badan manusia.

Sel stem manusia boleh diprogram untuk menjadi sel otot, sel saraf, sel jantung dan sel darah. Oleh itu, ia boleh diguna untuk menjana sel-sel dan tisu-tisu gantian bagi merawat beberapa penyakit seperti Parkinson, Alzheimer, leukemia, angin ahmar, serangan jantung, kencing manis, sklerosis multipel, artritis reumatoid dan lumpuh saraf tunjang.

Darah tali pusat merupakan punca yang agak baik untuk mendapat sel stem hemopoietik (HSC). Kira-kira 100ml boleh membina balik sistem hemopoietik dalam pesakit-pesakit yang kecil; biasanya kanak-kanak.

Transplantasi darah tali pusat pertama berjaya dilakukan 16 tahun yang lalu. Sejak itu, lebih daripada 3,000 transplantasi sudah dilakukan di seluruh dunia. Hanya sebilangan kecil transplantasi dilaporkan di kalangan orang dewasa.

Kebaikan transplantasi darah tali pusat berbanding dengan transplantasi sumsum tulang atau transplantasi darah periferal termasuk:

• Si penderma tidak perlu memasuki hospital untuk menjalani prosedur pendermaan. Pergerakan sel stem memerlukan ubat, misalnya cyclophosphamide dan G-CSF (untuk penderma darah periferal) dan ubat bius untuk penderma sumsum tulang.
• Darah tali pusat mempunyai risiko yang lebih rendah untuk menyebabkan penyakit graft vs host berbanding dengan transplantasi sumsum tulang dan darah tepi.

Kini, tiada panduan yang rasmi di Malaysia tentang isu kutipan dan penyimpanan darah tali pusat untuk transplantasi pada masa depan.

Pusat Darah Negara sejak beberapa tahun dahulu telah mengutip dan menyimpan darah tali pusat sebagai projek Bank Darah Tali Pusat Nasional yang tidak bertujuan mendapat untung. Doktor-doktor boleh melakukan carian di senarai penderma awam untuk mendapat sampel daripada orang yang bukan saudara pesakit sebagai punca alternatif bagi transplantasi sel stem.

Isu ini bertambah rumit dengan adanya bank darah tali pusat swasta yang membuat tuntutan kesihatan tanpa sokongan fakta perubatan. Akademi Pediatrik Amerika Syarikat memberi amaran bahawa keluarga mudah terpedaya dengan aktiviti “pemasaran emosi” apabila anak mereka baru lahir.

Kemungkinan untuk seorang anak menghidap suatu penyakit yang memerlukan transplantasi darah tali pusat masih belum dikenal pasti. Tiada anggaran tepat untuk kebarangkalian seorang anak memerlukan sel-sel sendiri yang disimpan. Tekaan yang paling hampir untuk keperluan ini adalah 1 dalam setiap 1,000 hingga 1 dalam 200,000 kes. Anggaran ini menunjukkan bahawa keperluannya amat kecil untuk seseorang menggunakan sel-selnya yang disimpan.

Petunjuk saintifik untuk kutipan dan simpanan darah tali pusat amat sedikit dan kecil. Keluarga yang mempunyai penyakit genetik yang boleh dirawat dengan transplantasi sel stem harus mengutip dan menyimpan darah tali pusat setiap anaknya. Kutipan darah tali pusat juga disyorkan dalam situasi-situasi yang tertentu, misalnya:

• Seorang anak yang menghidap leukemia, supaya adanya bekalan sel stem sekiranya penyakitnya berulang dan dia memerlukan transplantasi.
• Seorang anak yang memerlukan transplantasi sel stem tetapi penderma yang sesuai tidak ditemui.

Penyimpanan darah tali pusat oleh bank tali pusat swasta berdasarkan premis bahawa sel-sel disimpan untuk digunakan oleh ahli-ahli keluarga dan khususnya untuk anak tersebut sendiri (transplantasi autologus).

Transplantasi autologus menimbulkan masalahnya yang tersendiri kerana sel-sel stem seseorang mungkin tidak dapat mengubati patologi yang menyebabkan penyakit tersebut. Dalam kes leukemia dan penyakit kongenital seperti Talasemia dan Anemia Fanconi, memindahkan sel-sel sendiri dengan gen dan struktur imun yang cacat (dan menjadi punca penyakit tersebut) adalah kurang logik kerana ia akan “memulangkan” penyakit tersebut kepada diri sendiri.

Jumlah darah tali pusat yang dikutip pada waktu lahir, iaitu 80-100ml memadai untuk bayi atau si anak kecil. Bilangan sel stem tidak mencukupi sekiranya si bayi memerlukannya pada masa depan di alam remaja dan dewasa.

Oleh itu, konsep “insurans biologi” yang kerap dipromosikan oleh bank tali pusat swasta tidak tepat dan tidak kukuh. Perkiraan aktuari menunjukkan bahawa kemungkinan sel-sel tersebut akan digunakan sangat rendah. Dan juga, keperluan seseorang untuk ditransplantasi dengan darah tali pusatnya sendiri amat kecil.

Sebaliknya, penyimpanan darah tali pusat awam harus diperluaskan bagi kebaikan orang ramai. Kutipan darah tali pusat yang altrusitik (yang menguntungkan orang ramai) dan pendermaan khusus untuk keluarga berisiko tinggi harus digalakkan. Bank Darah Tali Pusat Nasional telah ditubuhkan untuk mencapai objektif-objektif ini tanpa kos. Di samping menyimpan darah tali pusat untuk penggunaan sendiri, orang lain yang memerlukan darah tali pusat boleh memanfaatkannya melalui transplantasi alogenik (berbeza dari segi genetik).

Soalan dijawab oleh Pakar Perunding Pediatrik dan Neonatal, Dr. Musa Mohd. Nordin ( musa@mpf.org.my)