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Post by IPH NET on Dec 15, 2009 3:47:08 GMT -6
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Post by cooper on Jan 20, 2010 16:52:49 GMT -6
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Post by miraclemom on Jul 26, 2010 19:45:36 GMT -6
Thank you for sharing. I would love a copy of this article. My daughter recently had a two weeks hospital stay after a bad episode of bleeding. She is 6 years old, and was diagnosed at age 6. She has been on orapred since, and efforts to wean her were unsuccessfull, and almost fatal. The side effects from the orapred are terrible. She only weighs 36 pounds, and is 42 inches tall. Clubbing is visible, and she just had to have surgery on her knees that became severely deformed. However, I am grateful that she is mostly very active, very advanced academically despite many absences from school (Hospitalized over 40 times), and is a happy child. I would sure like alternative treatment that would eliminate the side effects from the steroid. Pls send article to me if possible. Thank you.
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Post by IPH NET on Aug 14, 2010 16:36:45 GMT -6
Thank you for sharing. I would love a copy of this article. My daughter recently had a two weeks hospital stay after a bad episode of bleeding. She is 6 years old, and was diagnosed at age 6. She has been on orapred since, and efforts to wean her were unsuccessfull, and almost fatal. The side effects from the orapred are terrible. She only weighs 36 pounds, and is 42 inches tall. Clubbing is visible, and she just had to have surgery on her knees that became severely deformed. However, I am grateful that she is mostly very active, very advanced academically despite many absences from school (Hospitalized over 40 times), and is a happy child. I would sure like alternative treatment that would eliminate the side effects from the steroid. Pls send article to me if possible. Thank you. Thank you for your input. We have a community with many folks of all ages, and all types of treatments. I challenge the IPH community to give you the resources and give your doctor the other physicians that are working and researching IPH information that will help your daughter. My daughter was diagnosed in 1983-84 and is coming up on her 29th birthday with 2 healthy sons. She has had a few setbacks (just released from the hospital yesterday) but she is still living a relatively normal life. Regards, IPH-NET |
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Post by jabalcuza on Aug 31, 2010 14:01:24 GMT -6
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Post by IPH NET on Nov 21, 2010 8:42:46 GMT -6
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Post by IPH NET on Nov 21, 2010 8:43:38 GMT -6
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Post by IPH NET on Nov 21, 2010 8:44:40 GMT -6
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Post by IPH NET on Nov 21, 2010 8:46:49 GMT -6
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Post by IPH NET on Nov 21, 2010 8:51:30 GMT -6
Gracias por su historia. Usted puede ayudar a los demás con tu historia. Saludos. |
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Post by miriam on Nov 30, 2010 17:22:15 GMT -6
Dear All,
As we all know many articles on IPH just discuss the clinical features of the illness or a small number of cases and while this is helpful, I agree with IPH NET's comment a while back- that this research/ these articles is/are about life, about hopefully gaining more information about the cause of IPH and treating it. This article is about a possible cause. Does anyone know of a similar article?
Miriam
VEGF causes pulmonary hemorrhage, hemosiderosis, and air space enlargement in neonatal mice. T. D. Le Cras,1 R. E. Spitzmiller,1 K. H. Albertine,2 J. M. Greenberg,1 J. A. Whitsett,1 and A. L. Akeson1. Am J Physiol Lung Cell Mol Physiol 287: L134-L142, 2004.
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Post by miriam on Dec 3, 2010 16:53:53 GMT -6
Dear All,
The following is also food for thought I think:
Developmental regulation of NO mediated VEGF induced effects in the lung. American Journal of Respiratory Cell and Molecular Biology 2008; 39: 420-430. Are many of you using acetylcysteine and if so at what dose?
Take care,
Miriam
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Post by IPH NET on Jun 2, 2011 13:38:47 GMT -6
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Post by IPH NET on Jun 2, 2011 15:27:40 GMT -6
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Post by IPH NET on Jan 8, 2013 15:01:41 GMT -6
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