Thanks to All!

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Offline Fahad

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Thanks to All!
« on: May 31, 2007, 12:40:45 PM »
Dear All,

First of all, we would like to express our sincere thanks to all of you who shares with us your valuable advises and cares. Especially: Sajid, Manal, Sharmin, Canadian Family, Jean and as well as Omega.

We hope we're on the right path for treatment of our daughters; it's a Thal center were we use to go for routine B/T, so it's quite satisfactory I think?

After reading so many posts and recommendations for not to rush for B.M.T. as far as it's risky obscure? Finally we decided to postpone this task.

Now we're scheduling as per Manals' and Jean advised to go for DNA trial for our babies to find out their correct phase, so before we begin we need some more help from you all?

Q: Which particular test in DNA for Thal Majors? Can we know the specific term for this…please?

Thanks a lot 'Manal' for your helpful links concerning 'Retodifferntiation' its really amazing news? We are very much excited about this, hope it'll make easy for all? And also you asked about their HB outline, I'll definitely let you know the details in my next post and once again thank you for your curiosity.

We would like to hear some more revealing notes from our sites' heroes: 'Andy and Danielle'… we hope that they are not on Vacation!

Trust, some day we all will' be release from this dilemma???

Words of Wisdom!

Holding your head high!
And being the best you know you can be!
When life seems to fall apart at your feet!
Facing each difficulty with the confidence!
That time will bring you better tomorrow's!
Never give up…!

Best regards,

We remain,

Fahad

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
Re: Thanks to All!
« Reply #1 on: May 31, 2007, 02:00:21 PM »
Hi Farhad,

I have been following these posts but have not had time to adequately reply, as I have been attending to family matters after the death of my wife's mother.

There is one thing I think is extremely important and that is that your wife also come to this site and read the posts and find some support. It will help greatly for her to read through the posts of those in similar circumstances and see how others are dealing with their children's thal. You both will gain much strength from reading these posts and communicating with the other members.

There is a thal organization in Saudi Arabia and our member Miaki has worked with a group of thal children from Saudi Arabia at the recent TIF conferences. I will try to find out more from Miaki about this org.

Please take hope in that there is much research into a cure and new treatments for thal and also that we have already seen much development in thal treatment in recent years. I am confident that thal will become a very treatable disorder in the coming years and that patients will be able to lead full lives.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Thanks to All!
« Reply #2 on: May 31, 2007, 02:59:02 PM »
Fahad,

We are glad to meet you and your wife on this site.  Andy and Danielle are truly amazing, they have changed our lives and lifted our spirits. 

I hope that you will also realize that thalassemia, although serious and difficult to deal with at time, does not have to mean a death sentence for children born in recent years.  If you transfuse your children properly they will grow and develop very normally.  As long as you chelate them, they will not have the negative effects of iron overload.   Remember many of the older patients on this site were born 20 or 30 years ago and they can look forward to a good life.  Your children have even more advantages because they have everything available to them that those other patients did not. 

And as Andy said, their are so many treatments and cures which will be possible in the near future   Thalassemia does not have to be a disability - all of the little thals are know are very athletic and intelligent.  Your can have very bright and healthy futures.  Your concern and love for them will bring out the best in them.

Take care,
Sharmin
Sharmin

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Offline jzd24

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Re: Thanks to All!
« Reply #3 on: June 01, 2007, 01:49:08 AM »
Fahad,
     I don't know much about genetic testing, but I do know that you should ask for beta and alpha testing for sure. Sometimes they just routinely test for beta, and then you don't know if the alpha genes are causing some problems. So metimes alpha genes can cause intermdia. I know others on this site know more about this. Hope all goes well. Jean

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Offline Danielle

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Re: Thanks to All!
« Reply #4 on: June 02, 2007, 06:54:27 AM »
Hi, Fahad.  :wavey

I haven't been around due to some health issues, not related to Thalassemia.  You will definitely be hearing more from me in the future.  Right now, my life is pretty hectic.

I'm so glad that you and your wife are gaining some wonderful advice from our site.  I completely agree that BMT should not be rushed, as it's a very lengthy and serious process.  As Sharmin had said, many of us are in our 20's and 30's, like myself, and even many in their 40's and up.  If there was a time to be born with Thalassemia, now is probably the best.  There are better treatment options available, and a much better life expectancy.

As Andy had said, it would be best if your wife visited this site as well, so she can gain the support that she needs.  It can be very therapeutic to speak with others that share the same issues.  I wish you and your family the best of luck and I hope you stick around, and continue to post with us.  I'm looking forward to seeing your wife here as well.   :hugfriend

pls reply
« Reply #5 on: July 22, 2007, 08:44:29 AM »
A-o_A Mr Fahad
as i saw wrote that ur form KSA. i am also working in KSA(RIYADH). will u pls guide me that is there any treatment center in Riyadh for thal. Patients, who is dealing with nonsaudies(noncitizen of saudi arabia) so i will get treatment for my son.
i will wait for u reply. and if u like to contact with me at me personal mail id is mumtaz_ahmedmalik@yahoo.com
thanx
Dear All,

First of all, we would like to express our sincere thanks to all of you who shares with us your valuable advises and cares. Especially: Sajid, Manal, Sharmin, Canadian Family, Jean and as well as Omega.

We hope we're on the right path for treatment of our daughters; it's a Thal center were we use to go for routine B/T, so it's quite satisfactory I think?

After reading so many posts and recommendations for not to rush for B.M.T. as far as it's risky obscure? Finally we decided to postpone this task.

Now we're scheduling as per Manals' and Jean advised to go for DNA trial for our babies to find out their correct phase, so before we begin we need some more help from you all?

Q: Which particular test in DNA for Thal Majors? Can we know the specific term for this…please?

Thanks a lot 'Manal' for your helpful links concerning 'Retodifferntiation' its really amazing news? We are very much excited about this, hope it'll make easy for all? And also you asked about their HB outline, I'll definitely let you know the details in my next post and once again thank you for your curiosity.

We would like to hear some more revealing notes from our sites' heroes: 'Andy and Danielle'… we hope that they are not on Vacation!

Trust, some day we all will' be release from this dilemma???

Words of Wisdom!

Holding your head high!
And being the best you know you can be!
When life seems to fall apart at your feet!
Facing each difficulty with the confidence!
That time will bring you better tomorrow's!
Never give up…!

Best regards,

We remain,

Fahad


 

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