Hi Guys I thought I would introduce myself. I have a son Jarod (nearly 6) who has newly been diagnosed with ATR-X through genetic testing. Quite a shock...
Hi I'm Jen, I have 2 undiagnosed stepsons that are thought o have ATRX, But has not yet been confirmed. What test did they do on your son for diagnosis? I'd...
Hi Jen Thanks for replying, I had just about given up. I'll answer as I go if that's ok. ... From: Jen To: atr-x@yahoogroups.com Sent: Friday, July 23, 2004...
Hey it's Jen, Yea this isn't a very active site. I'm glad you have your own site though. Had some great info about your family. I love the humor you threw in....
Hi Jen Thanks for taking an interest. It does appear that our boys have an awful lot in common. To be honest even now I think Jarod fits the Angelman's...
I didn't know that was on the internet. The Woman's Day article written by Sharin Cohen. That was us. She even wanted to write a book about it, and there ...
jasmine jones
iliketoscoot@...
Jul 24, 2004 4:08 pm
417
Hi Guys Does anyone know of any research being conducted on atr-x. Is there anyone looking for clinical patients for their studies. Genetic or otherwise? ...
Hi Jasmine I'm Shazza a new member here. Just wanted to say hi and be a little nosey. Can you tell me your story? From what I can gather you have a brother...
My brother got diagnosed over 5 years ago, I would say. My sister and I are both carriers. My mother had a brother that we most definately think had the ...
Shazza, I would highly recommend that you speak to Dr. Gibbons about all of your questions. He is the expert on this disorder and can probably explain it all...
Hi Jasmine Thanks so much for quenching my curiosity. I know I'm very nosey...lol. I'm just sending the emails through to the atr-x Yahoo Group so if you're...
Thanks for that David and Linda I might just do that. Shazza XX ... From: David Hughes To: atr-x@yahoogroups.com Sent: Monday, July 26, 2004 10:18 PM Subject:...
oh its ok. aparently the emails are being sent to both places. dont worry about it. its ok. :D and any more questions you have i would be happy to answer....
Well, I can answer a lot of questions you might have about my personal experience, but I don't know very very much about the disorder itsself besides basic ...
Did you know you can send private personal messages to another person without sending them to the whole group? Click on the "MEMBERS" link located on the...
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...
mis ery
medmisery@...
Aug 26, 2004 1:53 am
431
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...
mis ery
medmisery@...
Aug 26, 2004 4:03 pm
433
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 ...
mis ery
medmisery@...
Aug 26, 2004 4:06 pm
434
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...
mis ery
medmisery@...
Aug 26, 2004 9:50 pm
436
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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mis ery
medmisery@...
Aug 26, 2004 10:59 pm
438
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mis ery
medmisery@...
Aug 26, 2004 11:03 pm
439
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...
