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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2017





53618 Posts in 5631 Topics by 5607 Members
Latest Member: Ahmed9

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: Dr Ramanan in Pune  (Read 28999 times)
Andy
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Will thal rule you or will you rule thal?


« Reply #30 on: August 12, 2014, 01:55:12 AM »

Dr R told me he has found that hydroxyurea does not have value to those who transfused during their first year (true thal majors). Its value lies more with those who can maintain an Hb of at least 6 without taking blood. Even then, I know patients who can maintain in that range who got little or no benefit from the drug. It really is a case by case basis for those whose Hb is naturally high enough that an increase of 2 points will free them from transfusion. Dr R said his success rate in these patients is about 20%, which is nothing to brush off, but also nothing for people to pin their hopes on. For borderline Hb patients, it may be worth a try.
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Andy

All we are saying is give thals a chance.
Himanshu Kumar
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Aditi


« Reply #31 on: February 06, 2015, 02:12:13 PM »

Saw this post on my FB wall. Posting under this topic as this has reference to Dr. Ramanan. Dr. Ramanan also claims to have done more than 220 transplants in one of his posts.

http://www.dnaindia.com/health/report-say-goodbye-to-blood-transfusions-1777546

https://www.facebook.com/lists/1375125612736173

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Regular transfusion, Keeping pre transfusion HB above 10 and Iron Chelation are the three mantras for thals to stay healthy.
Andy
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« Reply #32 on: February 06, 2015, 05:27:43 PM »

The post about Jatin is quite old. He has just passed 1000 days without transfusion. He is doing quite well, as are many others under the care of Dr Ramanan. I find it somewhat frustrating to see this success and realize that most doctors are still resistant to trying hydroxyurea and wheatgrass together in thal patients. As long ago as the late 1990's, we saw trials that recommended hydroxyurea as an alternative, especially in countries where funds are low and blood safety is not good. I realize that hydroxyurea is not an expensive drug in relative terms and will not enrich the medical industry like many other therapies do, but we should be far more concerned about the lives of patients than we are about the financial interests of the medical industry.
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Andy

All we are saying is give thals a chance.
NK
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« Reply #33 on: April 23, 2017, 12:36:48 PM »

My son is under treatment of Dr. Vijay Ramanan and he is doing well. No transfusion in last 6 months. Hb level is 9.5 to 10.5. Thanks to Dr Ramanan.
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Pratik
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« Reply #34 on: April 23, 2017, 04:15:27 PM »

My son is under treatment of Dr. Vijay Ramanan and he is doing well. No transfusion in last 6 months. Hb level is 9.5 to 10.5. Thanks to Dr Ramanan.
Wow, I just came to post in this thread today. Where do you live?

The intention of posting this today is that my dad visited today a seminar of Dr. Vijay Ramanan which was organized free of cost as a charity service by the grandfather of the son who has benefited from his treatments and was wishing that other thals can try to get benefit of this too.

I know this for at least 4 years now. I was skeptic like you all. Didn't believe. But after seeing live cases in front of my eyes, I was intrigued too. There's no 100% success rate but what's in trying? The dose he gives for thal is likely minor and won't cause major side effects. His excuse always has been (and so of his patients) is that isn't it better than the side effects or risk blood transfusion poses? Iron eats your body and organs out like anything.

One person of 18 years old is 18 months transfusion free, another one even graduated as MBBS doctor this year and is thal! He haven't transfused since past 2 years. And the grandson of the organizer, he's free from transfusions since 8 months.

You know what, even the doctors who were skeptic (my dad's very close childhood friend who's a reputed podiatrist in our state) was even against it. But when we called him to ask for another option now whether should we go ahead or not, he said yes, give it a shot. He's himself seeing some patients at his clinic which are now transfusion free. He mentioned that it's a 50/50 case, may work or may not work. But definitely give it a go.

We will take an appointment now to go to Pune. And I'll keep you all updated on this. If this works (which has worked for many), it's like dream come true lol, not transfusing. Recently I also get some fever and weakness after blood so lately it's a lot troublesome so getting any benefit from this (even a 1 or 2 month duration) would be amazing.

-P
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Every child is special.
Pratik
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« Reply #35 on: April 23, 2017, 04:17:32 PM »

My son is under treatment of Dr. Vijay Ramanan and he is doing well. No transfusion in last 6 months. Hb level is 9.5 to 10.5. Thanks to Dr Ramanan.
And btw, he's thal major right? How old is he?
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Every child is special.
Andy
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« Reply #36 on: April 23, 2017, 04:46:32 PM »

Just saw this post on Facebook today.

Quote
"On the eve of GOD's birthday standing next to my "NEXT TO GOD"!!
#2_years_of_geniusness_without_any_side_effect"

This is a quote from a patient who has taken Dr Vijay's treatment for two years. It is working for so many people. I see comments like this regularly on Facebook form patients taking Dr Ramanan's treatment.
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Andy

All we are saying is give thals a chance.
Andy
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« Reply #37 on: April 23, 2017, 04:52:41 PM »

BTW, the patient who made that comment has himself just recently become a medical doctor.
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Andy

All we are saying is give thals a chance.
Pratik
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« Reply #38 on: April 23, 2017, 05:01:18 PM »

BTW, the patient who made that comment has himself just recently become a medical doctor.
I guess we are talking about same guy whom my father spoke to today. Jobanputra is his surname right?

Are you talking about Thalpal group? I must have missed to join it. I have just applied to join the group right now.
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Every child is special.
Andy
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« Reply #39 on: April 23, 2017, 05:21:03 PM »

Yes, it is he but the post was on his personal Facebook page.
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Andy

All we are saying is give thals a chance.
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« Reply #40 on: April 29, 2017, 07:05:46 PM »

Pratik,
We live in Maharashtra. Perhaps you are referring to his recent seminar at Surat. My son is around 10 years old.
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