This message is directed to Dr. Gibbons. I was wondering what the cost is for having our daughter's chromosomes tested to see if she is a carrier. Can you...
Has anyone noticed that their boys get exhausted easily? Zechariah, at times, seems to get out of breath. He has these episodes of "Panting" when he breaths....
Hi It's interesting how you should mention that. I've noticed the last few weeks how Jarod seems out of breath easily. In Jarod's case it might be associated...
Hi. Does your other son have a different percentage of red blood cells affected? Did you find out if this stays constant or changes? I don't know if anyone is...
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Aug 26, 2004 1:53 am
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Hi I think having a doctor on the group sounds like a great idea personally! It sounds like this doc would be a great asset, with his/her background. Cheers ...
Hi Shazza, If you want to check out this geneticist/pediatrician I have had contact w/, his website is www.lleichtman.org. There is quite a bit of information...
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Aug 26, 2004 4:03 pm
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Also, I was surprised to find out that there are 5 federally funded alpha thalassemia centers set up in the U.S. I realize that our form is different, but I ...
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Aug 26, 2004 4:06 pm
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Kathy,
Where are these centers located?
Do you have the doctor's email address? I could send him an message inviting
him or someone from his staff to join...
David, About the centers: NIH has started a "Thalassemia Network" made up of 5 centers. I didn't write down the entire name, some just the location, but here...
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medmisery@...
Aug 26, 2004 9:50 pm
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Thanks Kathy, This information may be helpful to those who live close but not for us. *S* I believe the boys blood was examined by Dr. Buchannan back some time...
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medmisery@...
Aug 26, 2004 10:59 pm
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medmisery@...
Aug 26, 2004 11:03 pm
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Here is a partial email exchange w/ Dr. Neufeld. Further down are some questions to him and his answers. I hope it is ok for me to send these email exchanges...
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medmisery@...
Aug 26, 2004 11:16 pm
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Thanks for sharing that, it was really informative. I think it's strange that all I get is a diagnosis and nothing else. Being that ATR-X is a form of anaemia....
It sounds like you have a great family guys I hope you have some success with the testing. I'm wondering about that myself with Jarod's sister although she is...
Shazza, how long has it been that you have waited for confirmation? What I think I read about your Jarod (my son is also Jerrod) is that he started out ...
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medmisery@...
Aug 27, 2004 8:09 pm
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Hi Kathy and All I've only been waiting for the genetic testing a couple of months. Jarod does have Hbh inclusions however which would suggest anaemia at...
Hi Shazza and All, I wonder if there are other syndromes that have Hbh inclusions. Do you know? I still don't know/understand much about ATR-X. It seems...
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Aug 28, 2004 6:29 pm
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Hi Kathy and Everyone Else I guess the problem is that the condition is still considered pretty rare. I should check up if there are any other conditions that...
Thanks I was told that the hbh inclusions in me wouldn't necessarily tell us much. It's just that apparantly some carriers also have Hbh inclusions? I can't...
I went searching and this is what I came up with to explain Hbh inclusions: 1.. Here is the picture of what is seen under the microscope when Hbh inclusions...
Kathy,
The only problem I see in having him join the group is that he may join to sell
his products or services. This is something that I do not allow in any...
David, What did Dr. Gibbons tell you regarding this question? And does it get better or worse? Kathy ... _______________________________ Do you Yahoo!? Win 1...
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Aug 31, 2004 8:48 pm
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Sorry, but I haven't received a reply to the message.
We just had Zechariah's blood drawn last Friday and they are rechecking the Hbh
inclusion. We should...
Hi Shazza, Mybestson, David and All, That was interesting reading about Hbh inclusions. Good work, Shazza. So, if your son has Hbh inclusions, he either has...
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Aug 31, 2004 11:32 pm
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I'll be very interested to hear of any outcome. Best of luck. Shazza XX ... From: rarediseases@... To: atr-x@yahoogroups.com Sent: Wednesday, September...
Hi All To add a bit more to the story of the boy with suspected ATR-X and the 4 year wait for genetic results. The geneticist believed he had very strong...
David, I do understand what you are saying about not wanting anyone on here who wants to sell his services/products and I thought of the same thing. (However,...
