Congratulations on the fabulous new web site

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Offline §ãJ¡Ð ساجد

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Re: Congratulations on the fabulous new web site
« Reply #15 on: March 01, 2006, 11:09:55 AM »
Our infamous Dr Ghulam has also often made the claim that thal is caused by the liver and that the bone marrow has nothing to do with. But he has also told me that there has never been a successful bone marrow transplant, in spite of the fact that bmts are being done regularly and successfully in many centers around the world. The worst thing about these "healers" is they give people false hope and get them to squander their precious funds on a fraud. One more reason we need to make enlightening people about thal a daily habit.

Hey, I know this Ghulam Haider. He is no doctor but a Hakim who uses herbal therapy. One day he added me to his MSN messenger(got my id from the old MSN forum) and started to convince me that he has the cure for thal. I didn't know about him by that time and I too thought that he was a Doctor. When I asked where his clinic was and which medicine he gives, he replied me by giving me a cell phone number and told me that his medicine is a mixture of different herbs. I asked which ones, then he said that you are not my student of Hikmat(profession of Hakim) and refused to tell me the names of the herbs. I asked him wheter he used Wheat Grass? and what benefits WG has? He said that it is not suitable for thal and it is just a markting hype of the west!

Needless to say, I just blocked him from my MSN Messenger contacts. He will no longer see me online! :naughty
اَسّلامُ علیکم Peace be Upon you
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Offline baal

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Re: Congratulations on the fabulous new web site
« Reply #16 on: March 01, 2006, 08:36:19 PM »
hi dani

in this case i have to tell you something too...
a frend of mine akis (dionisos) also thal-major
30 years old...
they make a liverbiopsis at him..
and found human tissues that try to built blood cells
they called that EXTRAMEDULAERE BLUTGEWEBE
and in fact in my case...before 12 years they were
anxious about a shadow behind my pulmonic-system
and they make several CTs and later MRTs and
than they diagnostik this tissues i called you before..
i have it in my hole back..
so i thing there is a littlebit truth in the words of
the ^quacksalvers^               panos

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Offline Danielle

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Re: Congratulations on the fabulous new web site
« Reply #17 on: March 01, 2006, 10:26:56 PM »
Hi Baal,

No one in this world knows everything that the human body is capable of, so I don't doubt what you are saying is true.  There are probably many things that the liver and other organs do that we are not aware of, and the liver may have a bigger function in the production of cells than we know.  I'm just giving factual information from what I've learned, but I definitely believe that what you are saying just may be true.  I have never heard of these particular tissues you are referring to, but this may be from a study that we do not have here in the United States.  I'm going to do some research on it.

Thanks for the info. :)

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Offline baal

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Re: Congratulations on the fabulous new web site
« Reply #18 on: March 02, 2006, 01:38:53 AM »
re dani

you are wellcome.....
look for extrmedulare bloodbuildig(dont know the english word)
the german one is extramedulaere blutbildung....
but..
in our case it doesnt helps a lot..cause ourcells are not
lifeworth...understand ?         pan

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Offline Andy Battaglia

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Re: Congratulations on the fabulous new web site
« Reply #19 on: March 02, 2006, 01:43:43 AM »
Hi Pan,

What you are saying is that more red blood cells that are useless are no help, so stimulating the liver to somehow produce more rbcs would not do any good for thals. I would go one step further and suggest that it would just be creating more useless cells for the body to dispose of through the spleen and liver causing even more problems for those organs.
Andy

All we are saying is give thals a chance.

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Offline Hallu

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Re: Congratulations on the fabulous new web site
« Reply #20 on: March 02, 2006, 02:46:45 AM »
Hi everybody,
This is my first post since this website is launched.  I was very tempted to jump in this conversation of RBCs production in liver.
In a recent visit to doctor, I went over the possibility of splenectomy as I have a large spleen. As per my doctor it could be risky as spleen produces some RBCs and if destruction is less than the production in spleen then splenectomy might harm as it could bring down the haemoglobin. I was quite surprised to learn that production of RBCs can happen in spleen too. I use to think spleen only deals with old/irregular RBCs clean up and immunity.
Also, the doctor told that RBCs production in just not limited to Bone Marrow, but can happen in liver, spleen and gums too. Thals frequently get swollen/big gums as a result of increased activity in gums.

Just thought to share this with you all.

Small Introduction:
I'm 31 years old, thal intermedia (HbE + Beta) located in DC metro area. My spleen is enlarged (around 20*10*8), ferritin level is 420 with saturation 36%.

I really appreciate the incredible effort made by Andy and Danielle in constructing this website which is so *impressive* and at the same time so helpful. Their contribution in the previous msn group deserves a big applause too.
I would also like to thank Faye(Id: Saugirl on thalassemiapatientsandfriends msn group) as she helped me find a haemotologist in this area.  I'm not sure whether she has joined this site or not, but if she has, I would like to let her know that i'm grateful to her.

Thanks,
Hallu.








« Last Edit: March 02, 2006, 03:14:42 AM by Hallu »

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Offline Danielle

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Re: Congratulations on the fabulous new web site
« Reply #21 on: March 02, 2006, 03:16:11 AM »
I agree, Andy.  I guess that goes back to the reason why medications like Epogen and Procrit do not work for us.  Those medications are basically just the Erythropoietin that I was explaining about in a previous post.  If we are given Erythropoietin, it will just try to stimulate more bad cells, which is useless.
 :(

I am still going to research this tissue that Pan is talking about, because I find it very interesting.  Thanks again, Pan.   :biggrin

Hallu, nice to see you posting.  :)  I find what you say very interesting also, as I have not heard of the spleen actually producing cells, since it's part of the lymp system and actually filters the blood.  It engulfs all the old/dying red cells and breaks it down into bilirubin.  I'll have to research this as well.  Thanks.  :smileblue

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Offline §ãJ¡Ð ساجد

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Re: Congratulations on the fabulous new web site
« Reply #22 on: March 03, 2006, 03:07:23 PM »

Also, the doctor told that RBCs production in just not limited to Bone Marrow, but can happen in liver, spleen and gums too. Thals frequently get swollen/big gums as a result of increased activity in gums.


Gums!  :o :confused :noway Now this is somthing you don't hear very often! My HB remains quite low and my gums are tight as rubber. Only once I got bleeding from gums which was another story. See my post in Thal. Major section!
اَسّلامُ علیکم Peace be Upon you
§ãJ¡Ð ®âµƒ
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Offline Hallu

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Re: Congratulations on the fabulous new web site
« Reply #23 on: June 12, 2006, 09:28:12 PM »
Hallu, nice to see you posting.  :)  I find what you say very interesting also, as I have not heard of the spleen actually producing cells, since it's part of the lymp system and actually filters the blood.  It engulfs all the old/dying red cells and breaks it down into bilirubin.  I'll have to research this as well.  Thanks.  :smileblue


Danielle/All,

I came across this piece of info and thought to share with you all :
Hypersplenism
Many patients with thalassaemia major experience
problems of the spleen - a soft, purplish organ about
the size of a fist, located on the left-hand side just
below the diaphragm, under the ribs . A normal
spleen contains 20-30ml of red blood cells. However, in
patients with persistent moderate to severe anaemia
as a result of inappropriate blood transfusion, the spleen
may hold a litre (1000ml) or more of blood. This is
because the spleen *produces extra red blood cells* in
a process known as extra med-ullary erythropoeisis - i.e.
the synthesis of red blood cells outside the normal site
of production, the bone marrow - in an effort to help
the body overcome anaemia.


--Source : http://www.thalassaemia.org.cy/books/ABOUTTHA.PDF
Page 76

--Hallu

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Kathy11

Re: Congratulations on the fabulous new web site
« Reply #24 on: June 13, 2006, 01:16:46 AM »
Hi Hallu and all.
Thank-you for the posting of the info. about the Book written by the doctor in egypt.I'm reading it and I found it to be clear and easy to undestand.It is much appreciated.
Kind regards to everyone from kathy

Re: Congratulations on the fabulous new web site
« Reply #25 on: June 13, 2006, 02:18:56 AM »
Hi all the extra medulary hematopoiesis is not normal condition that is one of the pathology of thalassemia, due to extramedulary hematopoiesis these frontal bossing and facial features we see in thalassemics. I think the cocept of erythropoiesis in liver and spleen is not in adults, because in fetus it happens. But in thalassemics thats becuase of demand for oxygen and hemoglobin extramedullary hematopoiesis takes place.

However the pathology of globin mutations in thalassemia leads unbalanced globin chain that further enhance early destruction of these cells. Therefore some hematologists belive its not good for thalassemics to have extramedullary hematopoiesis. Instead its always better for them to have certain level of hemoglobin constantly so that thier own erythorpoiesis will have less pathological RBC production.

 

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