Help me please!

Dear All,

Hope you all doing well…!!!

Let me introduce myself; this is 'Fahad' a new member to this family, and a father of two daughters who were diagnosed as Beta Thalassemia Major…???

My first daughter:     "Zehra" she is 2-yrs. + 3-months…
My Second daughter:     "Dina"   she is just 9-months…

They both were born in Jeddah, Saudi Arabia.

It's around 3-months ago when we did their "Electrophoreses" analysis; the report is confirming that they were both suffering from (Beta Thalassemia Major)

I don't have words to explain my situation really? As that moment my wife gets into unconscious condition and we're still in a big confusion…?

Since a while ago, I was searching net to get some useful info to understand "Thalassemia" And finally I thank God I come across to this helpful site which almost helps me a lot. But I think I've still lot more to learn?

The hematologist suggested me and my wife to go for counseling and let us done  our "Electrophoreses" tests, the results showed that we both are the carriers/trait…? But we're still confused? And even me and my wife are far from a relative chain???

The Dr's advised us the only treatment for my love ones is the 'blood transfusion'… we really stunned after hearing about this treatment…?

Finally we couldn't find any solution, and we didn't know even a lot about this syndrome…? Suddenly we feel that we're helpless for our tiny ones and in a moment our life's are entirely changed towards a horrific gloom…?

On every 4 to 5 weeks we've to go through the painful blood transfusion practice to my little ones? And believe me till now I unable to control my wife situation, I observing she is dying day by day…? Since this deadly syndrome comes into our lives we've no more happiness remains?

My intention is how I can stop this painful treatment of my love ones by any method? One of my friend advised me there is a drug called "Hydroxyurea" it can be help to delay or cut the blood transfusion…? I don't have any idea about this drug and its procedures? Is it really effective?

Please help me and my family with your loyal advices…

My apologies for any inconvenient, and appreciate your time and efforts…

I'm eagerly waiting for your valuable feedbacks.

God Bless You All!

We remain,


Helpless Father!

Fahad

Hello Fahad,

to the site.

It is very sad to hear about your situation.

I'm afraid that for the time being Transfusions is the treatment for Thalassemia Major.

You can however look into the possibility of Bone Marrow Transplant or Cord Blood Transplant for the complete cure of your daughters, but first you will have to find a perfect donor match for them. The most probable match (but not always) will be a sibling with no Thalassemia while there is a better chance to find a non related match with Cord Blood.

Hydroxyurea is found more beneficial in Thal. Intermedia. A little is known about it's use in Thal. Major since there is less chance of HbF induction in Thal. Major compared to Thal. Intermedia.

You and your wife have to be strong from now on as your babies require special care and attention from you so that they get proper treatment on time so that they can live a healthy and normal long life.

Take care, Peace!

Dear Fahad,

I know how you are feeling at this time.  My son also has thalassemia major.  Let me reassure you that at age 8 years no one can even tell that  he has thalassemia.  He is an intelligent and athletic child - his teachers and coaches can not tell anything is different with him.  I tell you this because I want to reassure you that your life is not going to be a nightmare and you will experience happiness in your life again.  It will take time for you to stop thinking about thalassemia all of the time, then you can focus on enjoying your children. 

For now the BEST thing you can do is have your children regularily transfused and when the time comes chelated (iron removal with desferal). 
Each day new treatments are coming about, and I hope by the time your children are older they will both be cured.   My personal advice is to continue with the tried and tested method of treatment which is transfusion/desferal (your doctor will let you know when to begin desferal).  They can live full and healthy lives with this treatment. 

Your children will be healthy and happy, and so will you and your wife.  I thought that my life was over the day that my son was diagnosed, but that was far from the truth - he amazes me everyday.  I hope that he is cured one day, but until then I continue to get him the medical treatment he needs and enjoy everything that he does.  Remember, your children are still who they were before they were diagnosed - this disease does not define them.  Be careful before you jump into anything that promises a quick cure - because depriving them of proper transfusion therapy could harm your children. 

Remember to research and consult with others (especially on this site) before making any decisions.  We're all here for you while you adjust to this change in your lives.

Take care,

Sharmin

Dear Sajid,

Thank you very much for your quick reply, me and my wife are really appreciate your time and efforts.

We really shock to hear this news? In this age of computer and till now there is no medication to delay or cut the blood transfusion? in 'Beta Thalassemia Major'

As you advised us for 'Bone Marrow Transplant or Cord Blood Transplant' is the only treatment for complete cure of my love ones.

Can we bother you again Sajid? Just for more details for the above suggested courses? Can you let us know which one is out of harm's and secure way to go on? And where it can be done and how much it's approximate costs?

I'm really feeling stupid for these queries with you? I'm sorry for this? It supposed to be with Dr's I know? but I can't hang around through hospitals? Because you don't have experience of this place brother that how much difficult here to dig up even for a small query, we've to go through a long process…? Firstly we should have an appointment with Dr. and after so many measures we come to this conclusion?  I think you get my point…?

Why I'm asking these queries from you because, my financial background is not much stronger? And I should know before I go on and ask from a doctor and I don't want him to surprise me for its cost and procedures? And I really fed up from hospitals, cause I spends a lot of time and money?

But we helpless parents are still with hope for such a medication that miracle sly workout for our little ones…if we can find in any part of this world…???

And I think I should stop my lab! lab! now??? Other wise you'll get bore?

………………………………………Hopefully Not???.......................................

Once again I thankful to you and all who's bear with me!

Now and always need moral support from you and all of my friends on this site?


We remain,


Fahad

Dear Sharmin,

Thanks a lot for your speedy respond and your valuable hints as well as the way you realized our situation.

Me and wife have lot to state you, but at the moment and due to lack of time we just want to thank you with a core of our hearts and really appreciate your true feelings and understanding our present circumstances.

God bless you and your son always and everybody who are suffering from this deadly syndrome.

Looking forward for your co-operation in the near future!

We remain,


Fahad

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

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

     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
     

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

 

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!

Hi Farhad,

I found some information for the Saudi thal society. I think it would be good to contact them. It can be a good source of support for you and your wife and they should be able to help you find what medical resources are available there.


Organization: Saudi Thalassemia Society
King Abdulaziz University
Address: King Fahd Medical Research Centre
P.O. Box 6615
Jeddah 21452
SAUDI ARABIA
Telephone: 00966-2-6403844
Fax: 00966-2-6952076