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Offline thalfriend

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« on: October 29, 2009, 04:33:02 AM »
It is good to discover this forum and my oversight not introducing myself.  I hope this will be posted in the right place [spotlight...]  ???

  About 10 years ago [I am now 47] I noticed microcytic bloodwork when picking up medical records.  Was told I am thal minor and not to worry because there are 'no symptoms'.  On much later inquiry to helpthals.org website, I discovered that it is quite possible that my mother could have had thal intermedia and never known.  My ancestry is Italian on both sides [3 grandparents that came to US from Italy in 1920's...]  I had a sister pass from leukemia in 1971 and my blood was checked frequently -- no physician ever id'd my microcytic blood and I had to find it at age 37.  It is very troubling to think that other family members who have died from thrombosis related issues may have gotten helped if someone had ever screened my Italian family members for thalassemia.  It kind of makes my Italian blood a few degrees warmer...so now I am trying to help educate other family members and am so glad to know about the supplements that help, and whether or not I will ever be able to take iron supplements for low ferritin.  Thanks to all for the wonderful information and resources on this forum.  I have already shared it with my doctors...

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Offline Zaini

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Re: new
« Reply #1 on: October 29, 2009, 06:28:54 AM »
Hi thalfriend,



 :welcome2


Feel free to ask any questions you have in mind and try to read through the foirum as much as you can,specially the thal minor section and diet,nutrition and supplements.

Zaini.
^*^Xaini^*^

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Offline nice friend

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Re: new
« Reply #2 on: October 29, 2009, 02:11:11 PM »
Hi Ya ThalFriend ,
 :welcome2 .... hope you're getting the answers of ur concerns n questions .. keep visitng n posting :) ....

Best Regards
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

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Offline Andy Battaglia

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Re: new
« Reply #3 on: October 29, 2009, 02:12:11 PM »
Thalfriend,

Thrombosis is common among non-transfused thal intermedias, so you do have some foundation for believing that there may be some intermedia in your family. I think you should be careful about iron supplements. Low ferritin alone does not mean iron deficiency, so please have the complete iron studies done, if you haven't already. Please look through our section, Diet, Nutrition and Supplements, as there are other supplements that can boost your health. I would also suggest getting your vitamin D checked and if the level is not at least 30, start taking supplements to try to correct this. I am also Italian and have a terrible time trying to get my D levels up, living in upstate New York, where the sun is something of a scarce commodity. I also think L-carnitnine can play an important role in the health of all thals as they age, due to its ability to help fix nitric oxide which is very important for maintaining the normal flexibility of blood vessels.

By the way, I had the pleasure of meeting Paul DiLorenzo, President of helpthals.org at the NYC conference and found him to be a really nice guy. I hope that our groups can have a real spirit of cooperation in the future. His group puts on an occasional one day conference on the west coast and Dr Vichinsky is often a guest, so it is definitely worth attending for anyone in the western US.
Andy

All we are saying is give thals a chance.

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Offline thalfriend

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Re: new
« Reply #4 on: November 03, 2009, 10:02:45 PM »
  :smile  Thanks to Andy, Zaini, Nice Friend for the replies!!!  Andy, you would probably be interested to know that my vitamin D was substantially lower than it should be, and I got going on Vitamin D 50,000 i.u. - have not been on very long and will be interested to see if it helps...the high dosage is an RX strength, not too bad on price [$19-20] for anyone wanting to ask doctor about this. 

I plan to check out further the diet and supplement section of this forum -- recently I was at my local health food store and a company had left samples of an organic wheatgrass supplement -- on their package was the molecular structure of wheatgrass [chlorophyll] which is almost identical to hemoglobin as you have noted; I found this to be a fun little coincidence, because just days later, I was reading your post about using wheatgrass, Andy!!

Helpthals.org was my first connection to info. on reading further about thalassemia, and a cooperation with them sounds like a good idea, Andy.  If I had had the resources to attend the Cooley's Anemia conference which you wrote about awhile back, it would have been great.  I did hear that Dr. Vichinsky was there.  On the helpthals.org website, his and Dr. Wood's slide presentations from their 2007 conference are excellent and I would recommend anyone interested to see them online.  Dr. Wood's presentation on good cardiac care in thalassemia, and Dr. Vichinksky's on recognition and treatment intervention for thalassemia is excellent, as well as his other research and articles I have been reading about coagulation and other thalassemia issues....

 

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