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atr-x · X-Linked Alpha Thalassemia M/R Syndrome
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120
carissima Roberta, grazie per la traduzione fatta per Myra, avrei bisogno di una informazione da te, noi vorremmo molto un altro figlio,ma come tu bene saprai...
Monica Dominioni
monicadominioni@...
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Feb 8, 2002
1:24 pm
121
Hi to all, concerning Larsen we have great news, since a couple of weeks he can stand-up in has bed (although it's still not stable), and you can be sure he...
larsen camps
larsencamps
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Feb 28, 2002
7:06 pm
122
Hello to all, This is David. I am the founder of this support group and the International Rare Disease Support Network (IRDSN) ...
rarediseases
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Feb 28, 2002
10:41 pm
123
hello David, thanks for the msg, i read it on the ATR-X website last night also. yesterday while reading more msgs on that same website, i saw some old msgs...
mis ery
medmisery@...
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Mar 3, 2002
4:24 pm
124
hi again David, question---i read in something you wrote about there being a deletion of 2 amino acids in your boys according to some tests that gibbons did....
mis ery
medmisery@...
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Mar 3, 2002
4:24 pm
125
Kathy, I think Dr. Gibbons would best be able to provide the answer to this question. As far as I know, there is not anything that can be done. Dr....
rarediseases
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Mar 3, 2002
4:28 pm
126
David, i did not know the msgs i was writing you would be posted. i have already asked dr gibbons that question. do you use a dr in dallas who is really...
mis ery
medmisery@...
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Mar 4, 2002
12:48 pm
127
Hi Everyone, We are Wanda and Bill Bowen from Humble, TX (a suburb of Houston). We have a son , Jason, 23 diagnosed with ATR-X in April 2000 by Dr. Gibbons....
wcb101
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Mar 4, 2002
12:49 pm
128
In reply to Wanda's mesage about her son spitting up alot. My son Alex has also spit up since birth. He is now 13. He has taken an antacid (protonix) for...
Guthmann, Teresa
u38416
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Mar 4, 2002
3:11 pm
129
Hallo, Fijn dat Larsen kan staan in zijn bed. Bedoelen jullie op z'n knieen of kan hij zichzelf optrekken en gaan staan. Groeten, Dieta ...
dieta heij
dietaheij@...
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Mar 5, 2002
3:56 pm
130
Dear Gunter and Nancy, That is great news! Hooray for Larsen! I bet he is so proud of himself. Thanks for sharing that -- gives us something good to aspire...
alisabeck@...
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Mar 6, 2002
7:19 am
131
Hello, Dieta, A big round of applause and a big hug for Larsen!! Way to go! yea! Sincerely, Kathy Jones> __________________________________________________ Do...
mis ery
medmisery@...
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Mar 6, 2002
7:00 pm
132
Hello, I must of missed something...a message perhaps, what did Larson do?? Please tell me! Thanks in advance, Sandy from BC Canada, Cameron's proud mom! ...
sandy mannix
blue_eyes5999
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Mar 6, 2002
7:57 pm
133
Hi Wanda and Bill, we live close to Dallas now but moved here from Lake Jackson, which is just south of Houston. my son Jerrod is 30 yrs old and has ATR-X. i...
mis ery
medmisery@...
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Mar 7, 2002
3:42 am
134
Hello Welcome to the Family------I have two boys with atrx one is 13 and the other is 9 ... Sincerely,Dena Hunt ...
DENA HUNT
mickeyd29@...
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Mar 7, 2002
3:46 am
135
Hello David, do you have a current email address for the ATR-X support group in England? thanks, Kathy Jones __________________________________________________...
mis ery
medmisery@...
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Mar 9, 2002
8:15 pm
136
Kathy, Sorry, I do not have anything other than the the email address for the members of this group. I'm glad things are improving in your life. Thank you for...
rarediseases
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Mar 10, 2002
3:46 am
137
If there is an ATRX support group in England, I sure would like to know about it. Thanks, Lisa in London P.S. Kathy, if there isn't one, maybe we should start...
alisabeck@...
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Mar 11, 2002
4:41 pm
138
Hello, I've never tell you about my brothers and my nephew. Two brothers from me, they have ATR-x. Their names are Wim(28 years old) and Gerard(12 years old) ...
dieta heij
dietaheij@...
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Mar 11, 2002
6:54 pm
139
Hi everyone - My family may be moving to Michigan. Is anyone familiar with the programs for disabled children in Michigan? We currently live in Wisconsin and...
Roberta Rogstad
mom2spikedude
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Mar 12, 2002
2:32 pm
140
Hello Dieta, You are doing a great job with your English! Thank you for telling us about your sweet family. It is wonderful that you have this interest in...
mis ery
medmisery@...
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Mar 19, 2002
2:17 pm
141
Lisa, I don't live in England but have read about the group on the internet. The one address I found was no good. They also listed a snail mail address. I'll...
mis ery
medmisery@...
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Mar 19, 2002
2:17 pm
142
Hello Teresa, I wonder what the difference is between protonix and prilosec. Do you know how they compare? Is protonix simply an antacid like Maalox? Thank...
mis ery
medmisery@...
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Mar 19, 2002
2:17 pm
143
Hip hip hooray for Kenny!! :) Big hug from Kathy Jones, mother of Jerrod, age 30. __________________________________________________ Do You Yahoo!? Try FREE...
mis ery
medmisery@...
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Mar 19, 2002
2:17 pm
144
Thank you David, I wish we could just email w/out the posting. If you ever feel like doing that, please feel free. I have so much to say and so many...
mis ery
medmisery@...
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Mar 19, 2002
2:21 pm
145
Hello Kathy, Yes, I study(ing) English in school. English is a compulsory subject. And that's skilful now. I'm in the fourth form. I'm taking my final exam...
dieta heij
dietaheij@...
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Mar 20, 2002
1:15 pm
146
Hello Kathy, Yes, here in Plano we have a recreation center with an indoor pool area. It is a wonderful center. I couldn't stand it any other way at this...
Hughes.Family
Hughes.Family@...
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Mar 23, 2002
3:43 pm
147
Hi everyone, My little boy Aaron is 3 and a bit and was diagnosed as having ATR-X in July last year. He cannot do anything at all for himself but remains...
noel
noel@...
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Mar 24, 2002
5:12 pm
148
Hi, Our eldest son, Anthony has had two MRI many years ago. He is now 11. The test showed delayed mylenization. I'm not 100% on the spelling. I understand...
EMorrone@...
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Mar 24, 2002
6:26 pm
149
Hi - Kenny had an MRI when he was 15 months old. There was nothing different about the stucture of his brain to a non-ATR-X child. He is now 2 1/2 years old...
Roberta Rogstad
mom2spikedude
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Mar 25, 2002
3:03 pm
Messages 120 - 149 of 1258   Oldest  |  < Older  |  Newer >  |  Newest
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