New Book about Thalassemia (Cooley's Anemia)

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #45 on: March 04, 2009, 02:23:09 PM »
Canadian Family thank you so much for sharing what you have read with us.  I am still waiting to receive my copy - but it has been so nice to read your comments. 

I have much respect for Dr. Bank - after knowing him for 10 years and learning what a kind and caring person he is.  I do hope that his prognosis about the life span of thalassemia patients proves to be wrong however.  Dr. Vichinsky's opinion on this is that thalassemia patients, with full compliance, can live a full life span.  Perhaps, here is where the problem lies - many thals are not compliant and as soon as things go wrong they completely lose control of the disease.  If thals keep their iron levels down to begin with - if problems (such as antibody issues) occur then the problem will not spiral out of control.  In this way, Dr. Bank's prediction is correct.  We realize this when we try to get certain families to take proper precautions, or even join this site.  Some people don't take the time, that is so unfortunate. 

My hope is that with proper transfusion/chelation and supplements thals should be able to live a full life.  Dr. Vichinsky mentioned that he has 50 year old patients, who did not enjoy the medical advancements that we do these days - therefore our children have much more hope of living into their fifties and beyond.  What has and will continue to separate the survivors from those that unfortunately succumb to this disease is compliance.  Recently, a thal major became a grandfather - to me this is encouraging.  I have thal major friends who are in their 40s and they have children - and they show no signs of slowing down.  It has been so hard reading this 'expiry date' for years, I hope that it does not have to apply anymore. 

Our goal is a group is to increase the life span of every thal patient that comes to us for help - and my goal as a mother is to dedicate my life to preventing this disease from claiming my son as a victim.  My prayers are that thalassemia will not beat us - and that we are able to get rid of thalassemia. 

If genetix pharmaceuticals has stumbling blocks I hope that they are able to defeat them - and those that they cannot defeat - perhaps Errant Gene or some other group using stem cells can overcome these mountains.

Thanks again Canadian Family god bless all of our children  :hugfriend :hugfriend

Sharmin

Sharmin,

Your post is nothing but the truth.

Regards
Regards.

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Offline Andy Battaglia

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #46 on: March 04, 2009, 03:17:53 PM »
Even where treatment is available, patients often do not comply and this does lead to a lower survival age. In a place like the Maldives where non-compliance is usually related to social issues, where the majority of male thals feel that they are not wanted by their own society, we see how it is more than medical care that is required to keep people alive. An understanding of the complete impact of thalassemia from physical to mental and emotional is needed if we are to understand why the average life expectancy of thalassemics is still far too short. Yes, we have the ability to help thals live long lives but we also must convince them it is worth it, and in many places, only a change in public attitudes will bring this about.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #47 on: March 04, 2009, 05:04:48 PM »
I think there is a lot to be learned from this book in terms of really understanding the disease and the research that is being done to treat it.  It is also a reality that regardless of medical advancement some patients are not in environments where treatment is either not accessible or the social environment is not conducive to receiving proper treatment. It is also a truth that other people due to personal attitude or lack of information will not seek proper treatment.   For this reason, thalassemia being a disease requiring stringent maintenance and compliance will claim many lives when compliance is not there. 

Members of this site represent a group of people who are proactive and compliant.  We are a group of people who are constantly learning how to better treat this disease.  There are members on this site, who despite residing in countries that are less technologically advanced, are doing far better than some patients residing in North America.  There are patients who are transfused at the same hospital as my son – who have ferritins of 5000-7500 – can you imagine in this day and age living in North America how this can happen?  Most of us would be devastated if our children’s hg were to be higher than 1800!  In fact, the goal for many of our members is to have ferritin levels below 1000.  Today, with combination therapy – desferal, L1, exjade and hopefully starch desferal hopefully this will become easier.  Even a decade ago ferritins below 500 were unthinkable for transfused thals – today we have a number of members who have ferritins below 500.  These changes are very recent – the effects of these advancements for COMPLIANT patients will be much better – but difficult to measure at this time.  Even patients who have been compliant with dfo in the past are benefiting even more now with combination therapy –(patients like Smurfette.)  And these advancements are coming at an exponential rate so if you take excellent care of yourselves – you can take full advantage of these advancements. 

A doctor once told me that there is a chance that my son can outlive ‘normal’ children because he is closely monitored for any changes in his health, he gets excellent nutrition, supplements and exercise – at a time when the ‘normal’ children are eating junk food, watching tv and playing video games.   He also told me that my son is healthier than me – because his hg is mostly higher than mine.  This applies to the children of other members here as well.  Our hope is to get our adult patients who have had high ferritins in the past here too!  So much is reversible with proper chelation. 

Although, very unfortunately the average life expectancy of thals is not very long – as a group I do not think that the members of this website bear any resemblance to average thalassemia patients.  The information that we are receiving from Andy and the top scientists in the world on this site will provide us with what we need to give ourselves and our family members every advantage. 

Sharmin

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Offline Zaini

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #48 on: March 04, 2009, 05:30:05 PM »
Quote
  Although, very unfortunately the average life expectancy of thals is not very long – as a group I do not think that the members of this website bear any resemblance to average thalassemia patients.  The information that we are receiving from Andy and the top scientists in the world on this site will provide

 :agree

Zaini.
^*^Xaini^*^

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Offline Andy Battaglia

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #49 on: March 04, 2009, 05:36:45 PM »
Well said Sharmin. As I told you recently, let's work at creating some super-thals, real superheroes who defy all odds. Nothing in lfe comes without work and yes, it takes a lot of work and dedication, but a healthy thal is possible, and I agree that with the complete treatment program that provides both medications and supplements along with any appropriate psychological counseling, we will see patients who are actually healthier than their health-ignoring peers.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #50 on: March 04, 2009, 10:58:01 PM »
Thanks Sharmin for the reassurance :hugfriend :hugfriend cannot agree more

manal

Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #51 on: April 07, 2009, 06:55:14 PM »
hi thalpals... m new user here n m also the thas major...how r u all m married  23 yrs old.. my husband is perfect MASHALLAh... the problm is wid me..i also ahav hepa c...what shoul i do? plz do guide me soon

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Offline Manal

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #52 on: April 07, 2009, 07:53:08 PM »
Hello Atiya Khan and welcome to the site :welcome2


We had a very recent expierence of one of the members here using half teaspoon of nigella sativa seeds (black seeds) mixed with one teaspoon of honey in order to control hepatits C and she actually did. Also using milk thistle has a great imact on the liver functions.

What is more important is controlling the iron over load in the liver cause having iron overload already affects the liver functions. Have you ever made ferriscan (It is like an MRI to show Liver iron concentration) What is your ferritin??

Atiya, please read our posts about the nigella in the links below as it really has many benefits on the whole body, not only the liver. Please feel free to ask anything you want

http://www.thalassemiapatientsandfriends.com/index.php?topic=2639.0;highlight=nigella

http://www.thalassemiapatientsandfriends.com/index.php?topic=2539.0;highlight=nigella

http://www.thalassemiapatientsandfriends.com/index.php?topic=2636.0;highlight=nigella

manal

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Offline nice friend

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #53 on: April 07, 2009, 08:39:50 PM »
AOA Atiya Khan ,
 :welcome2 , i hope you're getting te answer of your concerns/questions ..... best of luck  :goodluck ... i hope you'll find this community ver helping, caring, loving and encouraging ..
please stay in-touch with us and keep posting... feel free to asking anything and dont hesitate to share anything you want to share .... i hope that you will b a regular/active memebr of this site , i m saying this bcoze wel all are here to help each other and we like to help each other and new onez as well .... it will be our pleasure  to help you as well ....

 :agree with Manal , she is absolutely right about milk thistle and Nigella Seeds (kalonji) ... and also please let us know about your S.Fe ( Serum Ferritin ) reports and if you're living in Pakistan the Ferriscan is out of question  but if you're living or have been in any other country previously and have done Ferriscan there, then please share both test ( if you Dont mind / if you like ) .....

Best Regards
Take Care
Umair
« Last Edit: April 07, 2009, 08:44:58 PM by nice friend »
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #54 on: April 20, 2009, 10:47:02 AM »
what is milk thirstle???? temme

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Offline nice friend

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #55 on: April 20, 2009, 12:11:35 PM »
Hi ,

Milk thistle for Liver :
http://www.thalassemiapatientsandfriends.com/index.php?topic=968.0;highlight=milk+thistle

Milk Thistle plant's pics :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1201.0;highlight=milk+thistle

Milk Thistle for diabetes : ( bcoze milk thistle support's healthy Liver Function )
http://www.thalassemiapatientsandfriends.com/index.php?topic=2022.0;highlight=milk+thistle

Essentiale Forte - liver supplement :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1811.0;highlight=milk+thistle

Vitamin and Mineral Supplementation in Thalassemia :
http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0;highlight=milk+thistle

Rabicabir/ Original Baraka.... an Effective Antiviral Drug in Hepatitis C Virus :
http://www.thalassemiapatientsandfriends.com/index.php?topic=2539.0;highlight=milk+thistle

Thalassemia Minor and Hepatitis B :
http://www.thalassemiapatientsandfriends.com/index.php?topic=2666.0;highlight=milk+thistle

Hepatitis-C :
http://www.thalassemiapatientsandfriends.com/index.php?topic=243.0;highlight=milk+thistle

Getting back to normal :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1974.0;highlight=milk+thistle

Need the help of all members of the site who r using these suppliments :
http://www.thalassemiapatientsandfriends.com/index.php?topic=2007.0;highlight=milk+thistle

Diabetes and Hepatitis :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1147.0;highlight=milk+thistle

I feel i have reached to end of my road :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1404.0;highlight=milk+thistle

i think its enough for this time to learn and know about milk thistle  .. best of luck reading these threads related to Hep-C and milk thistle's effectiveness .... a quick introduction is .. it support's  healthy liver function and its a liver cleanser as well .......

Best REgards
Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

*

Offline Sharmin

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Re: New Book about Thalassemia (Cooley's Anemia)
« Reply #56 on: May 28, 2009, 02:35:39 AM »
I have finally received my copy of the book!  My best friend ordered the book and read it a couple of months ago.  It was the most amazing experience - she read it cover to cover - and now she understands me and thalassemia better than ever. 

I will give you my feedback after reading the book.  I think that it is very helpful to have our friends and extended family members read this book.

Sharmin
Sharmin

 

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