Thalassemia Patients and Friends
Discussion Forums => Announcements => Topic started by: Sharmin on May 15, 2008, 05:52:56 AM
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Hi everyone,
Dr. Arthur Bank - one of the leading researchers in the Paris gene therapy trials by Genetix Pharmaceuticals - has written a book about Cooley's Anemia. The book is expected to be published in the fall by World Scientific Publishing.
If you are interested in reading it you may want to look out for it in the fall:)
Sharmin
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coool!
very great announcement! thanks , will be keeping a heads up for it
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This book will be published in late November. Look out for a flyer from CAF. I will post one too once I have it.
Sharmin
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My dear thal pals,
I encourage everyone to read this book it is written by the founder of Genetix Pharmaceuticals. Dr. Arthur Bank is also one of the kindest and most considerate individuals I have ever known. It is now listed on Amazon.com as well as on Google. But it is back-ordered. It will be published in November but not available in the US until January 2009.
I will post the flyer as soon as I can figure out how!!
Sharmin
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Hi Sharmin ,
Thanks for the Updates ,, its super :thumbsup hope to find it soon ...
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Hi Umair,
I am really trying to post the flyer - but I am still having technical difficulty. I truly feel that every thal patient - family member and friend should have a copy of this book. This man has studied the disease inside out for many many years and it would be so helpful for us to all have this book.
Sharmin
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Thanx Sis ,
i hoppe you will find a copy of that book realy soon ... wish you all the best ..
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Below is information from the flyer for this book:
Please click on the attachment at the bottom of this post to view the flyer!
Turning Blood Red - The Fight for Life in Cooley's Anemia
by Arthur Bank
This book is the story of an inherited blood disease — Cooley’s anemia or beta
pathophysiology of this human hemoglobin disorder, the book describes the emotional
and medical impact of the disease on patients and their families. It also summarizes the
research on the disease at the level of the genes, DNA, RNA, and proteins. In addition, it also
includes chapters on current therapy and future approaches to the disease, such as gene
therapy, stem cell transplantation, and antenatal diagnosis. A multidisciplinary book covering the fields of
hematology, pediatrics, medicine, genetics, and molecular biology, the book details how Cooley’s
anemia serves as a model for understanding other human genetic and acquired diseases such as
cancer, neurological disorders, and heart disease. It also provides new insights which may lead to
new therapies.
Contents: Patients and Families: Love and
Loss; In the Beginning; Nunzio: One of a Kind;
Connie Paradiso; Life on the Run; Amy’s Loves.
Understanding Thalassemia: The Big Alpha;
Human Globin Messages; Finding the Genes; The
Ultimate Answers; You Can’t Go Home Again. The
Best Medicine: Current Care and Future Goals: The
Standard of Care; Dedicated Doctors; Human Beta
Globin Gene Therapy; Genetic Roulette; Modern
Times; Love Unbound.
Readership:Hematologists, molecular biologists,
clinical researchers, students and medical
personnel at all levels interested in science and
medicine.
250pp (approx.)Fall 2008978-981-283-247-4US$39.95£21.60981-283-247-5
T
Simply order the book online at www.worldscibooks.com/medsci/6926.html before xx xxx 2008 andget 20% off the list price! Please quote SLXQ070811 when you order.
TURNING BLOOD REDTheFightforLifeinCooley’sAnemiaby Arthur Bank (Columbia University, USA)
ASIA & THE REST OF THE WORLDWorld Scientific Publishing Co. Pte. Ltd.
Farrer Road, PO Box 128, SINGAPORE 912805
Fax: 65 6467 7667
Tel: 65 6466 5775
Email: sales@wspc.com.sg
About the author
Dr. Arthur Bank has been a scientist, clinician and teacher
at Columbia University and Presbyterian Hospital for over
40 years. He was Head of the Division of Hematology at
Columbia-Presbyterian Medical Center. He has been a leader
in Cooley’s anemia research, has published extensively
on the mechanisms of human globin gene regulation and
human gene therapy, and has been continuously funded by
grants from the National Institutes of Health throughout his
career. Dr. Bank is currently Professor Emeritus of Medicine
and of Genetics and Development at Columbia University. A
graduate of Columbia College and Harvard Medical School,
Dr Bank is a nationally and internationally recognized
authority in the field of hematology research.
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Enjoy,
Sharmin
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Hi Sis ,
Great Sharing Sis , its superb . thanx for sharing it and for the efforts to find this for us .. :ty
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Hi thalpals - I am trying to get information from the publicist regarding how we can purchase the book. I will keep you all posted.
Sharmin
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I have ordered a copy of the book - I am eagerly waiting for it to arrive! I will let you know what I think once I receive it.
Sharmin
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Thanks Sharmin :hugfriend
manal
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The Cooley's Anemia Foundation website has posted an interview with Dr. Bank about this book. It's at:
http://www.cooleysanemia.org/index.php?option=com_content&view=article&id=69:arthur-bank-book-on-thalassemia-to-be-published&catid=1:latest-news
Take care!
Craig
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I am still waiting for my book to arrive, I don't know why it is taking so long. I really like reading the interview, I am glad to hear that the book is written from this perspective.
Sharmin
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Hi everybody,
I got the book, finally :) but havent been able to find time to read much of it yet:(. Little S is pulling up to stand and walking holding on to furniture now so i spend all day chasing him around ..........unless i am busy with the other kids.
Since bones are weak in thalassemia is it serious when he falls while trying to walk? Or does that problem happen later on? He is 9 months old now and has hadtwo transfusions.
Any advice about caring for thalassemic toddlers would be appreciated. Especially how to get them to stay still for their transfusions. I am dreading the next one in early March.
Zahra
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Hello Zahra
I am happy to know that little S is growing and starting his first steps. I don't think that there is any prroblem at all falling while he is trying to walk. Make sure that he is taking a good supplement of calcium, magnesium, zinc and vitamin D ( By the way, the first time i saw Osteocare was in Dubai, so i thinki t will be easy to find there), generally all children need this at the toddler age whether thal or non thal
As long as you are keeping his HB in a good level, giving supplements and monitering growth and chelating when needed, everything will be just fine his bones and allhsi body functions.
As for keeping him still during transfusions, i think getting a portable DVD with his favorite cartoons will do. Also try to get the series of Baby Mozart, Baby Einstein, baby Bach... they are so interesting for babies and toddlers. I remember when i wanted to leave my children quiet for an hour to do anything i used to play one of these CDs they work like magic. My children were like frozen statues when they see them as they get so absoarbed. They are also very educational.
manal
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Hello Zahra, :hugfriend
Lots of hugs and kisses for Little S :kissy
As long as you are keeping his HB in a good level, giving supplements and monitering growth and chelating when needed, everything will be just fine his bones and allhsi body functions.
I couldn't agree more with Manal,if you'll keep his hb between 9 and 10,keep giving him right supplements and don't let his iron increase too much,you won't have to worry about his growth InshAllah .
Zaini.
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Dear Zaini and Manal
Thank you for your advice. :hugfriend The problem is my son hasnt taken any interest in cartoons at all yet. All he wants to do is walk, he has skipped crawling altogether. Last month he tried to pull out his canula with his teeeth when we restricted his other hand but this month I am more concerned about his pulling up and falling and thus jerking the canula out. I took rattles and toys to sit andplay with last time. Now he wont sit at home. Maybe it will be different in the hospital. I hope so.
I will check for osteocare. What is the dose for infants? He is 9 months old and 9kg. I have read about wheatgrass helping but am waiting till he is allowed to start wheat for that. Are the other supplements like IP6 mentioned here suitable for an infant?
Zahra
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Zahra,
Your son sounds like mine when he was little. You will need to keep an eye on him the first few times after they become this active, but over time they become wise on their own and find ways to avoid pulling the IV tubing etc. Just be sure that the nurses reinforce the site for him because he is active.
My son is ten now, but he plays nintendo Wii while we are in the hospital and sometimes he decides that he wants to walk around so I am still quite careful with him. The nurses often tell me that he is a big boy now so they don't have to reinforce his hand - but just last year he disconnected his IV somehow while playing Wii and blood started to spurt out of his hand - since then I don't put anything past him. I just tell the nurses that my son is a monkey and reinforcements are required. I am giving my children Osteocare liquid - and the bottle says for children 1 - 2 yrs take 1 teaspoon twice daily. Perhaps you can ask your doctor if it is okay to begin giving him 1 teaspoon ful until her reaches 1 yr of age.
Have you given him D Vi Sol? Vitamin D drops?
I give my son IP6 capsules - I believe that a liquid form is available too. I don't know if your son's stomach will be ready for them at this point, perhaps you can start them at 18months of age. What do the others think?
Best of luck to your little guy,
Sharmin
Ps. By the way Zahra have you read the book yet? The author has told me that the book explains gene therapy and how the method they are using they attempt to avoid the cancer risks previously associated with gene therapy.
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IP6 capsules can be opened and the powder mixed with liquids, making it easy for anyone to take. It is also very safe, as it already exists in every cell and is found in the bran of all grains.
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Dear Andy,
Thank you for telling me this. Do you know how much would be appropriate for a 9 month old? Also what other supplements would be good for him and age appropriete? My other kids had started wheat by this age but this time the docs are saying at least 10 months. A change in thinking I cant argue with as I have gluten intolerance myself and they think that later introduction may help avoid this. When he can start wheatgrass is there any brand you would recomend and how much should be given? Thank you for being here to help. I asked his paediatrician about which Vit E he could use as I heard it would be good for him but he didnt seem to have any idea.
Zahra
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Hi Sharmin,
Thanks for the advice . 'Monkey is a really good description' . I like it. I have asked my husband to come also this transfusion and am hoping next time he'll be more stable and not falling so much as he gains experience walking so i can handle it myself.
I am giving him folic acid, Mixavit (which contains Vit D ) and some homeo medicines. I read here and in some other places that they can help prevent spleen enlargement. His spleen isnt palpable yet and I hope it stays that way. I wonder what age it normally enlarges. Splenectomy sounds very scary to me. I hope I never have to face it. The homeo doc is also hopeful it will help his anemia.
I will look for osteocare in the next few days.
I have started reading the book but have no chance to read cover to cover like I used to b/c of the baby and the the exams of the other kids going on right now. I havent reached the gene therapy part. Hope to soon. It started out really scary with stories of kids dying young in the 70's but moves on to a twice married 50 plus lady that is going strong. Then it tells about how they found out what is wrong in beta thalassemia. I feeling foolish at struggling to understand the science behind it because I should having a backround in organic chemistry and having studied biochemistry also ...................but that was soooooooooo long ago. Now I have started the part about tryingto turn on the fetal Hb gene. I'll post when I read about the gene therapy.
Zahra
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Dear Zahra,
Tea is good for thals if your son likes it,and i think a small dose of vitamin E would be enough for now,as my daughter is 8 years old and she takes 400 IU daily.Did you read our thread about Nigella and honey.And does he take milk? If yes then you can give him a little bit of turmeric with it as turmeric is also an antioxidant.
http://www.thalassemiapatientsandfriends.com/index.php?topic=2639.msg24666#new
You can try this and see if it helps him maintain his hb.
Zaini.
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Hi Zahra
The dose of vit E for kids aged between 1-3 yrs is 100-300 IU. My doc too didn`t know much about vit E , and I started him on it after reading posts here.( the doc doesn`t know that I am giving Hassan vit E). I give him 100 IU mixed tocopherols (GNC brand) as Sharmin had once posted that she gives little A 200 IU. If her 10 year old takes 200IU I felt it was OK to give 100IU to my 2 1/2 year old. But 8 year old Little Z is taking 400 IU ???
As for the spleen Hassan`s spleen was a little enlarged earlier but once he was on hypertranx regimen its not palpable . Infact a couple of docs do ask us if he has undergone splenectomy :biggrin
take care
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Hi Sharmin,
I skipped ahead to the part you spoke about. It says the previous trial used powerful viral enhancers (used to activate or turn on genes) which were able to activate nearby genes as well. From what I understand this process of activating nearby genes is called insertational mutagenesis .Unfortunately one of those genes nearby was an onco gene ( cancer gene ). The new lentiglobin trial is instead using only human beta globin gene-specific promoters and enhancers which are only active in red blood cells. also they are adding DNA sequences called 'insulators' to prevent activation of oncogene sequences and insertational mutagenesis.I hope it works.
Zahra
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Thank you maha and Zaini. I wil look for the GNC brand of Vit E. My son isnt into any liquids b/c he is still nursing. He does take solids though and I add tumeric to vegetables and khitchri for him. I hope thats as good.
Zahra
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The problem is my son hasnt taken any interest in cartoons at all yet
I know what you mean cause my daughter was the same but these CDs are not cartoon,it is orchastrated music for young listners with some moving scenes (age:Newborn to 3 years). It works like miracle even for babies. I have tried them on all the children of my family and it worked :rotfl
manal
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Zahra,
Thank you so much for the information. I have ordered the book but I have not received it yet. I was very curious to read about the gene therapy.
Sharmin
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Hello,
I received the copy of the book today. The book seems to be in plain English. I am excited to read this book.....
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Happy Reading :wink do share with us the important parts.
Zaini.
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I am still waiting for my copy. I hope to receive it soon. I am glad that it is easy to read, I think that this was the intention of the author - to write a book that everyone can read and learn from.
Sharmin
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Some highlights of chapter 1, Introduction
Chapter 1
Introduction
The author explained the hemoglobin molecule is made of beta and alpha globin together with heme. The two (Beta and Alpha) globins acts as two fingers and heme as thumb to hold the oxygen just like a pitcher holds the ball in a baseball game or a bowler in cricket game. The hemoglobin molecule catch and hold oxygen from lungs and pitches the oxygen to tissues in the body just like the pitcher or bowler does in their respective games. The difference is that each hemoglobin molecule pitches the oxygen with precise accuracy billions of times in a day for months. The amino acid that creates the alpha and beta globins are formed in chromosomes 11 of our DNA or our genetic makeup which lies in the marrow of bones. In thalassemia, due to absence of healthy beta gene (one finger is missing to hold the oxygen) resulting in the inability of hemoglobin to hold the oxygen properly. The normal production of alpha globin tangles the hemoglobin molecule as the balancing beta globin is absent to balance the oxygen resulting in the destruction of hemoglobin molecule in early stage. We know the story what happens next……increased hemolysis, expansion of bones due to extreme activity of bone marrow etc etc etc.
Red blood cells, like all other cells, are made in the bone marrow cavities inside our bones. The earliest red blood cells somehow know that their main job is to make large amounts of hemoglobin. The scientist don’t know how they know, but they know. The earliest red blood cells made in our bone marrow have nuclei that carry our chromosomes and DNA. After dividing a few times, these nucleated red blood cells in the bone marrow, brusting with hemoglobin, become smaller, lose their nuclei, and leave the marrow to enter our circulating blood.
Starting chapter 2
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Thank you so much Canadian family for the information, very simple and informative
manal
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Yes it seems quite simple and easy to understand,i wonder if i can get my hands on it :biggrin i'd love to read it.
Zaini.
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Chapter 2 Love and Loss
Very depressing, I warned my wife not to read it, yet she did and could not sleep well. The chapter is about thalassemia patients and their families in 1970's and 80's and their hardship......
No other comments on chapter 2.....
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Yes Canadian family, it is very clear from the tiltle.. its better to think positive
manal
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Canadian Family,
Thank you for sharing. Chapter 2 is one that I personally feel afraid of reading as well. It is sad to know that parents who were in our shoes in earlier times had to go through such heartbreak. I hope that within the next decade things will change drastically enough - that they will no longer have to suffer at all.
Sharmin
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That reality about thalassemia was what drew me to help in the first place. The thal reality that Lisa grew up with was dismal and colored her own beliefs about her life. In her mind, thals were very lucky to make it to 30 years old. I had no idea back then that there were already thals in their 40's. Perhaps if some of these people had been more open to sharing and helping, I may have been able to do something for Lisa. I do know that what I have learned over the years could have made a difference to her health, but it's too late for that but I can help others and do my best to do so.
I want to say that the old reality is no more and that reading about it can give you different perspectives, and I hope one it does give everyone, is the perspective on how much thal treatment has advanced in such a short time and not only does that mean thals can expect to live far longer, but also that we can all expect more improvements and better lives for thals. I know it's sad to read about how it was but don't let it affect how you approach each day. Please remember that Dr Bank has lived through much himself and I am sure he has lost many friends to thalassemia and there is no way he could write a book about thal without remembering those who are gone and providing the perspective on how much different things are today. From one who has lost many dear friends to thal, I will say that it is so sad and at times it is hard to go on and stay involved, especially when I realize there are people I know who will die because they refuse to work hard enough to stay alive. I still don't know what to do when people won't chelate enough and probably never will know what to do, but I have learned to help them in any way I can, even if just to help them find some acceptance of their decisions and some peace of mind. Meanwhile, I hope you all realize what a difference you make to your children and how much your constant intervention does for them. There are people here whose kids would no longer be with us if the parents had not stayed on top of situations and acted when necessary. Take some strength in what you have shown already and know you will always make a big difference in the lives of your kids.
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In her mind, thals were very lucky to make it to 30 years old
This thinking is still present,my own aunt who lost her daughter to thal back in 80s,still had the same perspective about thal,when i told her about new treatments and technology and how it had helped thal's life span and over all health,she was like "yeah may be" .
I hope you all realize what a difference you make to your children and how much your constant intervention does for them
Credit goes to this forum Andy,it has helped us and encourage us in learning ways in which we can help our kids,it amazes me when i tell people about this forum and they don't join it.
Zaini.
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Chapter 3, 4, 5 and 6 tells the stories of families in early 60s to 80s.....
Part 2
Dr. Arthur Bank describes how he came with his conclusions and different mutations of beta thalassemia major (he talked about his experiments) in 60s, 70s and 80s. He talked about the management of thalassemia in modren days. Sadly, he admitted that eventually this condition despite all medical advances would kill its victim. He still thinks the lifespan of 30s to 40s at this time.
I found Dr Arthur Bank is inconclusive re. the cure of thalassemia at this time. He seems of the view that there is a lot to be done...you climb one mountain and see another mountain waiting for you. He talked about different treatment options (we all know, fetal hemoglobin etc.).
Still reading.
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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
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I also am unable to understand Dr Bank's point of view,i also think that with proper transfusions and compliance with chelation our kids will have a very fair chance to live a normal life span.
Zaini.
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I never understand why people say that about thal life spans, especially when as Sharmin said, there are patients alive today in their 50's (I know several) and they did not have the advantages that are here today when they were growing up. I truly believe as Dr Vichinsky does, that patients who are serious about compliance with all aspects of treatment will live long lives.
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Science always comes up with facts and figures to put in their books. I think what Dr Banks is forgetting while discussing the disease is the human being who is going through the disease and the family who is watching their beloved suffering.
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Dr Arthur Bank is basically a scientist and I found in the book he does not want to talk about anything else other than what he knows today or making a claim. He did mentioned his recent talk with one of the higher official of the CAF where he said"I did not want to raise the false hope'. For example, later he did remotely mentioned about the thalassemia patient who became grandfather but he stopped making a statement about the full life span of thalassemia.
I think the statement of him re. 30s or 40s is worldwide and is based on today’s figure (he did admit the huge difference of medical care between developed and under developed countries). He mentioned about the very good quality of life for thalassemia these days. Well that is his personality.
Tariq,
I fully agree with your post.
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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
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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.
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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.
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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.
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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.
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Thanks Sharmin for the reassurance :hugfriend :hugfriend cannot agree more
manal
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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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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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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
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what is milk thirstle???? temme
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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
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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