Thalassemia : Need Opinion

MrsJohn

Thalassemia (from Greek θαλασσα, thalassa, sea + αίμα, haima, blood; British spelling, "thalassaemia") is an inherited autosomal recessive blood disease. In thalassemia, the genetic defect results in reduced rate of synthesis of one of the globin chains that make up hemoglobin. Reduced synthesis of one of the globin chains can cause the formation of abnormal hemoglobin molecules, and this in turn causes the anemia which is the characteristic presenting symptom of the thalassemias.

Gini, my friend ni...Anak sulung die baru 1 tahun 2 bulan, disahkan ade major thalassemia. Doc tu bgtau, treatment ialah tiap2 bulan masuk darah & hari2 kene inject buang zat besi berlebihan...coz  iron berlebihan kan bahaye..

Doc tu bgtau ( & wikipedia bgtau..)...the only solution is bone marrow transplantation... My friend ni bgtau, mak die tak bagi buat pemindahan sum2 ni..takut lepas tu cacat ke hape...I was like..ok...diam je ler..dengar dulu kan...

Then, die cakap...die plan nak have another baby, so that they can get the bone marrow from the stemcell... She asked for my opinion. Aku pun tak tau nak kata ape. Sbb both hubby & wife ade minor thalassemia...chances baby diorg 50% major T, 25% minor T & 25% normal..

In the meantime...I told them to go for 2nd opinion..diorg tgh dapatkan khidmat nasihat ler...

Korang rase, patut tak diorg have another baby sbb nak dptkan sum-sum2 tu?
Sini, ade tak sesiapa ade experience anak ada major Thalassemia?
Ade sesape tak yg simpan stemcell? Which company yg ok?

Can share experience so I can give advise to this friend....


Thanks ya....

azwa81

alamak taku nyer masalah mcm ni...i pun pembawa talesemia beta....now tgh peknen...i tak tau la hubby i ada ke tak..harap2 dia bukan pembawa....i pun berminat nak tau pasal tretment talasemia ni..pada yang ada pengalaman tu..please share kat sini...thanks..

Delifrance

it's a real gamble..as the baby ade chance to be normal, minor..or major like the older sibling. What they say based on science is

Delifrance

azwa..suruh la husband test darah to confirm that he is not a carrier. kurang2 kalau dah tau (nauzubillah, mintak2 dia bukan carrier kan) bila baby lahir, kita lebih bersedia dgn segala kemungkinan.

all the best to you!

Delifrance

mrsjohn....kalau nak opt for bone marrow match without trying to conceive - lagi gamble i rasa.. coz bone marrow requires 100% match between the donor and the recipient. blom tentu mak ayah kite bolkeh match dgn kita so kene que kat hospital kan.

sapa ada majalah MAKNA (from pusat kanser negara) utk 1st quarter 2008- ada article pasal stemcell ni. dekat one of the pages juga u can see the bone marrow ward statistic - just compare berapa ribu cases and berapa ramai pesakit utk ward  bone marrow transplant tu - a huge difference.

gotta go.. mrsjohn kalau ada soklan pm ye kot2 susah nak connect. line i ni kadang ok kadang tak ok..

MrsJohn

yes azwa...baik suh ur hubby buat blood test...kalau ape2 at least u dah prepare...kite doakan yg baik2 je yer...

MrsJohn

Originally posted by Delifrance at 28-10-2008 09:17 AM
mrsjohn....kalau nak opt for bone marrow match without trying to conceive - lagi gamble i rasa.. coz bone marrow requires 100% match between the donor and the recipient. blom tentu mak ayah kite  ...

alamak ye ker..sib baik ku sah suruh diorg buat bone marrow transplant... So, nampaknya the option to have another baby tu tak bape ok kan? Sbb kalo the new baby ade Major T, the stem cell tak leh pakai..

Eh,..kalau stem cell cousin bleh pakai tak?

MrsJohn

Kitorg pun tak buat blood test b4 kawin dulu...duh, so ignorant!. My chinese girlfriend pernah bgtau yg die ade minor T, so die kene make sure pakwe die tak de talasemia...hmmp....

izati_abc

mcm my friend br ni la...b4 this dia keje kat insurance company....lama jgk la dlm 6 thn..then she quit..x tahan keje situ katanya..pastu br ni dpt offer from another insurance company jgk...so dia kene buat thorough medical check up...masa co lama tu buat jgk tp xdela ape2 problem lak....skali br ni rupe2nye dia pembawa Thalassemia....pastu dia kata masa tu br nk check husband dia camne...sbb kakak husband dia 2 org ade T jgk...anak dia ape cite aku pon tatau....now ni anak dia dh 5 thn..just imagine langsung x sedar kan.....aku pon x pnh check......

sayawifenikmie

Hi,

1. Bone marrow cousin atau sesiapa itu soal kedua....yang penting ialah macth dengan that baby. So langkah yang perlu ialah buat pemeriksaan sama ada his/her cousin boleh donate his/her bone marrow.

2. Pendapat ibubapa/ahli keluarga yang takut baby cacat bila mendapat rawatan amat tidak tepat. Berdasarkan pengalaman anak saya yang menghidap leukemia AML..telah banyak kali pengambilan bone marrow dilakukan dan menjalani rawatan 2 1/2 tahun ...Alhamdullilah anak saya sihat sekarang.

3. Yang penting dapatkan cara rawatan yang betul dari pakar perubatan dan jangan membuat andaian tanpa berbincang dengan mereka yang arif.

4. Semoga kawan anda tabah dengan ujian Allah. Selepas kesulitan pasti ada kelegaan/kebahagiaan.

moga dapat membantu.

Delifrance

Originally posted by MrsJohn at 28-10-2008 09:42 AM



alamak ye ker..sib baik ku sah suruh diorg buat bone marrow transplant... So, nampaknya the option to have another baby tu tak bape ok kan? Sbb kalo the new baby ade Major T, the stem cell牋...

stemcell cousin - sab but true is like general pool - maknanya chances of matching is like 1 in 20,000. tp kalau Allah kata kun fa ya kun, dan ada rezeki kita, tetap match la kan.

doctors know better... so drpd tertunggu2 matching donor yg tak kunjung tiba and MEMANG SUSAH nak cari donor, maybe boleh try to conceive again. ikut science juga, kalau parents dua2 carrier - ada 4 anak - 1 akan jadi major 1 akan jadi normal and 2 akan jadi carrier. yg carrier tu pon masih boleh guna stemcell nya.. kurang2 dah tak perlu tukar darah tiap2 bulan kan and quality of lfe is a lot better.

takpe lah..suh la kawan u pikir.... if she wants opinions from the expert suh dia contact i and i'll get my boss to tag along. he knows more of course

for the rest- i kept my baby's stemcell for the fear that i might have to use it some day... now i encourage others to do so..tp susah nak educate rakyat malaysia.. walaupon sgt2 mampu - tp boleh cakap 'takpe lah..rasa nya tak perlu' - kalau kata TAK P{ERLU tu i feel sad lah..sebab who are we to say that we WILL NEVER need to use it kan? pikir2 lah.. sesapa ade cousins or adik beradik yg preknen... cerita2 lah pasal thread ni...

[ Last edited by  Delifrance at 28-10-2008 10:04 AM ]

Delifrance

good to hear that..alhamdulillah

boleh share buat kat hospital mana and sapa donor nye?

my-alja

errr.....deli, btol ke stem cell nie drp org tua pun boleh dapat kann?

i ada baca satu brochure pasal stem cell nie diambil drp org2 dewasa, tak perlu tunggu baby baru....tapi ada beberapa stages lah sebelum diambil...

mrsJOhn....sian kawan awak tu, suruh dia dpt kan 2nd opinion dulu kot

sayawifenikmie

1. Anak i dapat rawatan kat HUKM.

2. Tak buat bone marrow transplant coz tak match dengan his sister, cuma jalani kimotherapi..
tq.

Delifrance

boleh... dipanggil adult stemcell or pheriperal blood stemcell. more costly -extraction saja price RM9000 to RM18,000 bergantung pada berapa injection ubat diperlukan utk dptkan the required amount of stemcell


tp adult stemcell ni asalnya dr bone marrow so property nye sama - perlukan 100% match juga. so normally org2 yg simpan stemcell dia ni mmg sedar yg chances nak donate is quite slim tp dia simpan la utk diri dia kot2 kene cancer darah ke, diabetic foot ulser ke, utk bina heart muscle yg baru ke..but i'm not the right person to talk about adult stemcell ni..

Delifrance

ni utk yg collect stemcell and simpan kat tempat storage lah. kalau yg ada sesiapa ahli keluarga sakit and buat this procedure kat hospital government/hukm/um - very much cheaper rasanya..tp yg penting KENA ADA PADANAN dulu.. buat la the said HLA test first (Human leukocyte antigen)

honey_dew

biasa nye stemcell guna among adik-beradik itself

sayawifenikmie

• Talasemia (bahasa Inggeris: Thalassaemia) adalah penyakit kecacatan darah.
• Talasemia merupakan keadaan yang diwarisi, iaitu diwariskan dari keluarga kepada anak.
• Kecacatan gen menyebabkan hemoglobin dalam sel darah merah menjadi tidak normal.
• Mereka yang mempunyai penyakit Talasemia tidak dapat menghasilkan hemoglobin yang mencukupi dalam darah mereka.
• Hemoglobin adalah bahagian sel darah merah yang mengangkut oksigen daripada paru-paru keseluruh tubuh.
• Semua tisu tubuh manusia memerlukan oksigen.
• Akibat kekurangan sel darah merah yang normal akan menyebabkan pesakit kelihatan pucat kerana paras hemoglobin (Hb) yang rendah (anemia).
• Sel darah merah bertugas membekalkan oksigen kepada tisu dalam badan manusia.
• Kekurangan sel darah merah bagi membekalkan oksijen akang mengakibatkan pesakit talasemia berasa lesu, tidak bermaya, dan mungkin sesak nafas sekiranya paras hemoglobin semakin menurun.
• Mereka yang mengidap Thalassaemia tidak mampu membekalkan seluruh sel tubuh mereka denga bekalan oksigen yang mencukupi akibat kekurangan hemoglobin dalam sel darah merah.
• Tisu yang ketiadaan oksigen gagal berfungsi dengan baik.
• Dengan itu tubuh mereka menjadi lemah, gagal berkembang dengan baik, dan mereka boleh menjadi sakit teruk.
• Pesakit Talasemia biasanya mempunyai paras hemoglobin yang rendah iaitu kurang daripada 10g/dl.
• Mereka yang mengidap Talasemia mempunyai kelebihan melawan penyakit Malaria.
• Rawatan penyakit Talasemia
• 
  
  • Pesakit perlu menjalani transfusi darah berterusan setiap bulan.
  • Transfusi darah berterusan akan menyebabkan pengumpulan zat besi di dalam organ penting badan seperti hati, jantung, dan kelenjar endokrin yang akhirnya merosakkan fungsi organ-organ tersebut.
  • Rawatan penyingkiran zat besi berlebihan perlu dilakukan dengan suntikan ubat Desferrioxamine.
  • Pemindahan sum-sum tulang sekiranya ada penderma yang sesuai di kalangan keluarga.

sayawifenikmie

Thalassemia (www.drpbanerji.com)
Author: Dr. Paramesh Banerji
This is one of the most challenging diseases being faced by mankind with virtually no permanent treatment for those who suffer from it. The only real treatment is periodical replenishment of blood through transfusion.

We are working very hard on this disease. So far there has been a limited success and two distinct treatment strategies have been designed. We have found these to work on a good percentage of cases. However, though this percentage is small it is infinitely better than what is available from conventional medicine where there are virtually no successes to show.

We are listing below only a handful of cases from the hundreds that are being successsfully treated by us to illustrate the point.

As can be seen from the citings the patient's need for blood transfusion has gradually diminished and ultimately stopped. At the same time the patient's Haemoglobin count gradually rose and allowed him/her to lead a normal life.

* Each > represents an expression of the fact that the patient is 25% better than when she/he started the treatment with us.

[ Last edited by  sayawifenikmie at 28-10-2008 10:48 AM ]

Delifrance

Originally posted by MrsJohn at 28-10-2008 08:24 AM
Then, die cakap...die plan nak have another baby, so that they can get the bone marrow from the stemcell... She asked for my opinion. Aku pun tak tau nak kata ape. Sbb both hubby & wife ade minor thalassemia...chances baby diorg 50% major T, 25% minor T & 25% normal..

kite collect stemcell dari bone marrow (kalau tak simpan masa baby).