New to the site

Hello everyone!
We are the parents of Mohanish. He is our darling son aged 1 yr 8months. He has been detected for a year now and has received 16 transfusions so far. We are basically from Bombay,India, but currently in Guangzhou,PRC. We are under the treatment of Dr.Chunfu Li in Nanfang Hospital. Mohanish's serum ferritin is 1472.2ng/ml and we will initiate the iron chelation with Desferral soon. It is indeed good to be a part of this group and know about all your experiences. We hope that the procedure is not as tough on all of us as it seems to be. We almost detest reading about the experiences of the young ones as it may make us lose our strength and will. But then I guess we do draw it from some invisible and probably magical source anyhow! We are looking at bone marrow transplant in the near future as an option for treatment and will keep you all posted about it too.
Thanks for being here for each other and may we all get strength.
Manoj and Madhavi

  Manoj and Madhavi,

You will find very many tips here about beginning to use and using desferal at http://www.thalassemiapatientsandfriends.com/index.php?topic=132.0

and also throughout the Iron Chelation Corner at http://www.thalassemiapatientsandfriends.com/index.php?board=5.0

You will also find much information about raising thal children and what is necessary for treatment and regular testing and something else you will find that is somewhat unusual in the world of online forums. You will find a real family here that will offer love and support and help you through even the toughest of times. One thing you can be sure of is that we really are "here for you". 

Hello Manoj and Madhavi,

All of us are here for the same reason, which is to help each other regarding the Thal issues; which includes medical advices with respect to our own personal experience and morale support as well.

Feel free to ask anything that you may have in mind and share your own experiences with us.

  Hi ! welcome to the site Manoj and Madhavi! We hope you may both find this site helpful and informative, like we did.........  Take care and Godspeed!

Welcome Manoj & Madhavi, i am happy that you joined this site and i am sure you will find it so informative and helpful.

Manal

Welcome Manoj and Madhavi,

You'll defintely find answers to all your questions here,and most important of all you'll find strength to fight thal after reading posts and meeting people here,this site is a miracle created by Lisa Cammilleri.

HATS OFF TO YOU LISA.

ZAINI.

Welcome, Manoj and Madhavi! You are at the right place for information and support. Hope all goes well in the coming days with your little one. We are here for you. Take care, Jean 

Hello everyone!
We are the parents of Mohanish. He is our darling son aged 1 yr 8months. He has been detected for a year now and has received 16 transfusions so far. We are basically from Bombay,India, but currently in Guangzhou,PRC. We are under the treatment of Dr.Chunfu Li in Nanfang Hospital. Mohanish's serum ferritin is 1472.2ng/ml and we will initiate the iron chelation with Desferral soon. It is indeed good to be a part of this group and know about all your experiences. We hope that the procedure is not as tough on all of us as it seems to be. We almost detest reading about the experiences of the young ones as it may make us lose our strength and will. But then I guess we do draw it from some invisible and probably magical source anyhow! We are looking at bone marrow transplant in the near future as an option for treatment and will keep you all posted about it too.
Thanks for being here for each other and may we all get strength.
Manoj and Madhavi

Hello Manoj and Madhavi,

Welcome to the site. You would definately benifit from the tons of information here shared by Thals and would also get answers to common questions that pop out from new parents of thals

Could you share with us - How did Mohanish get diagonised? What were Mohanish's Hb levels?
There is Dr. Agrawal - a very well known Thalassemia doctor in Mumbai and you should try to get an appointment with him and see what he can point you to.

Iron Chelation
For Iron Chelation, Combination Therapy (Desferal and Kelfer) would be the optimum treatment for Mohanish. Also, Kelfer is well known for removing Iron from the heart. Also, it is available in oral (tablet) form. In India, Kelfer is available, so you might want to consider that option too. A newer drug named Exjade(which too is an oral tablet) is NOT yet in the market in India, but we hope it comes up soon

Bone Marrow Transplant
There have been numerous cases of successful Bone Marrow Transplants, so that sure is a good option. Does Mohanish have a sibling? Did you get their HLA match up done?

With optimal treatment, Thal is a manageable condition and NOT as bad as it once was. Patients are living in their 50s these days and with medical advancement, we hope they will live even longer

Awareness in Family
Also, you want to be aware that your siblings and your wife's siblings might be silent carrier of Thalassemia, so it would be a good idea to get them screened or atleast make them aware, so they can plan for their kids accordingly

Manoj and Madhav,

You have come the the right place.

welcome to you and yours.
im also new here and we all are becoming a bigger an bigger family.im wishing you all the best and if there is any way we all can help you'd definately know immediately.
feel free to ask everything                      

trinigirl***