Discussion Forums > Thalassemia Major

Help me please!

(1/3) > >>

Fahad:

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

§ãJ¡Ð ساجد:
Hello Fahad,

:welcome 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!

Sharmin:
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

Fahad:
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

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

Navigation

[0] Message Index

[#] Next page