Discussion Forums > Thalassemia Major

Help me please!

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Manal:
Dear Fahad

Welcome to the site. I asssure you that you will learn a lot from this site, even more than doctors will tell you.

I know exactly what you and your wife are going through  right now and i am sooo sorry for this. I want to give you some information and advices about different subjects

*First, make sure that you are dealing with doctors that had dealt before with thalassemia as this will save you a lot of confusion.

*Please spend some time reading the posts on this site cause they will make you understand more about the disease and will enable you  to communicate better with the doctors rather than only receiving information and not able to understand the full picture.

*Concerning the bone marrow transplant, till now this is the cure for thal but you have to know that this procedure has its risks that we can discuss later and believe me it is not an easy deceision to take. Actually this procedure is very very expensive if done without an insurance or through international agreements between countries or any of this sort. It is best done in Italy, but also it is done in Saudi Arabia with the same success rate as of Italy. It is done by Dr. Abdalla al Jefri in KING FAISAL SPECIALIST HOSPITAL AND RESEARCH CENTER.

*Also there is a new procedure that is being discussed now a days ( actually i am seriously thinking of trying it for my son but i am in the process of investigating right now) called retodifferntiation that was discoverd by Dr. Ilham Saleh from Saudi Arabia, but she lives in London. By this procedure you can expand the number of transfusions from 6 to 12 month in thal major patients but is done to children starting 3 years of age. You can read about this procedure in the following links:
http://www.thalassemiapatientsandfriends.com/index.php?topic=798.0
http://www.thalassemiapatientsandfriends.com/index.php?topic=966.0

Fahad, did you do DNA test for the girls, are you sure that they are majors, not intermedias?? Could you tell us some information about them, i mean their HB levels, symptoms,...etc

Anyway, feel free to ask any thing and be sure that we are all here for you and your wife
take care
Manal

Canadian_Family:
Following is our sincere advise:

Keep visiting the site and read/write post with your problems.
Knowledge is power, you will learn Thalassemia is not as traumatic as it was 20 years ago.
Your children will grow normally and will be able to do normal things, tell your wife don't panic but learn about the condition (Trust me it will help).
At this point, concentrate on blood transfusions and Iron Chelation (if recommended by doctors).
Bone Marrow is still an option, (Learn more about it) there are many risks/strings attached to it.
Keep positive frame of mind and soon it will be part of your life.

Remember: Keep posting your fears/problems (This is an excellent place to learn and take the steam out).

Regards

jzd24:
     Welcome to the site, Fahad and family. Please keep asking questions! That is the only way to learn more. We are happy to share our information with you and reply to any questions you ask.  I also wonder as Manal does, if your daughters have major or intermedia. DNA testing is the best way to find out for sure. There are different ways to go about treating thalassemia, depending on if it is major or intermedia.
     As you can see from the posts, if treated appropriately, children and adults can do very well with this disease. I know it is so heartbreaking to find out your children have a genetic condition. We all feel for you and our hearts go out to you.  We are here to help you get through the shock and help you find the best treatment.
     Please ask all the questions you want. Good luck, Jean
     

omega:
Dear Fahad

Bone Marrow Transplant and Cord Blood Transplant are the realistic cure for Thal Major at the moment. My daughter who is a Thal Intermediate, started regular blood transfusion at the age of 6, had her Bone Marrow Transplant done in April 2006 in Malaysia. she is recovering well and does not need to undergo blood transfusion since Apr 2006. She is back to school since Jan 2007, the only thing is she is wearing a mask in school at all times.

Should you need more information, please let me know.

Thank you.

Best Regards,

Omega

 

§ãJ¡Ð ساجد:
Hi Fahad,

For the detailed information about the procedure and cost of BMT (Bone Marrow Transplant), I would recommend you get in touch with the members who have undergone it on their children. One of them is Omega who just posted earlier and the other is Mr. Khalifa from Kuwait who had his son's BMT done in Italy.

Remember, BMT is very risky and complications can occur even if you find a perfect match. Doctors and parents have to think about a hundred times before doing such a risky operation after assessing the condition your child is in like Liver fibrosis, age and amount of cell dose required according to the child's need.

You must consult a BMT specialist after you have found a perfect HLA matching donor before jumping in to conclusion of performing BMT on your child.

I hope in the mean time you will be wonderful parents and give proper and regular treatment to your children so that they can have happy and healthy long life, even with Thalassemia.

Take care, Peace!

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