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Post by IPH NET on Feb 13, 2010 11:58:35 GMT -6
I found this link on the web. There are medical professionals doing research on Idiopathic Pulmonary Haemosiderosis! Idiopathic Pulmonary Haemosiderosis - World 1st Medical Treatment By Researchers At Queen Mary University London And University Of Leicester www.medicalnewstoday.com/articles/72840.phpCheck it out and let me know what you think. IPH-NET |
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Post by miraclemom on Jul 26, 2010 19:31:25 GMT -6
I read this a while ago, but my daughter's doctors are not interested at all. They simply ignore any information I try to share that is not the usual conventional stuff. I am trying to arrange taking her to London.
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Post by miriam on Jan 3, 2011 14:00:20 GMT -6
My daughter has been on acteylcysteine since the article a few years ago. I don't think it has made much difference but given that it's so well tolerated and non toxic and perhaps is helping, I'm very happy for her to be on it.
Miriam
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evi
New Member
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Post by evi on Jan 28, 2011 10:09:17 GMT -6
My son has been on acetylcysteine too. (reading the article) Bevor this article we tested ascorbic acid as an antioxidans. Both - We have noticed no difference! So we stopped this therapy! Now he is only on steroids.
Evi
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evi
New Member
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Post by evi on Jan 28, 2011 10:13:01 GMT -6
What are you thinking about the article in Indian Journal of Pediatrics - Volume 77 - May 2010:
Matrix Metalloproteinase-9 and its inhibitor in idiopathic pulmonary hemosiderosis?
Regards
Evi
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Post by miriam on Jan 30, 2011 16:37:48 GMT -6
Dear Evi,
Many thanks. I'll try to get that article. Have you seen this article- 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. AJP - Lung Physiol July 2004 vol. 287 no. 1 L134-L142.
Benefit of gluten-free diet in idiopathic pulmonary hemosiderosis in association with celiac disease.Gulshan R Sethi, Kamal K Singhal, Amarender S Puri, Mukta Mantan. Pediatric pulmonology. 2010 Oct 21:
It's very helpful to have some scientists on board. It's hard to find articles about the pathology of IPH since it's so rare. Have you found any more?
Regards,
Miriam
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evi
New Member
Posts: 10
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Post by evi on Jan 31, 2011 2:10:59 GMT -6
Hallo miriam,
I read ca. 30 articles - most from: PubMed.gov. I'm not studied medicine, i'm dr. in microbiology optional human biochemistry.
Yes, papers about celiac disease i read a lot of. But my son has been testet often - no hints to celiac disease! He has "only" starch in stool after eating banana (we needet 1 year to discover this!!! Dayly tests - coloration with lugol) now he dosn't eat anything with banana - and the starch was never more!
We also testet our home for the fungus Stachybotrys sp. most chartarum + atra - that causes pulmonary hemorrhage in Cleveland-Ohio - negativ!
Thanks for the other article - I try to get it.
One article that I find interesting is: Cohen, Schlomo - 1999 Southern Society for Clinical Investigation - Volume 317(1), pp 67 - 74 ; Idiopathic Pulmonary Haemosiderosis - a case report - ( Canges before acute bleeding (neutropenia and blood eosinophilia) are evident. )
Actually we make dayly tests with his urine - combur 10 test - cobas.
Regards,
Evi + Hubert
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Post by miriam on Jan 31, 2011 16:00:54 GMT -6
Dear Evi & Hubert,
Many thanks for all your postings. I'm a medical doctor but not specialised in Respiratory! I'm interested to see that there's basic science work being done. We need the pathophysiology of this for more targeted treatments.
I've just read the abstract and am awaiting the full text. The comment about needing to have a lower white cell count reminded me of the article (Pediatr Pulmonol. 2008 Nov;43(11):1067-71. Maintenance therapy with dose-adjusted 6-mercaptopurine in idiopathic pulmonary hemosiderosis.
Luo XQ, Ke ZY, Huang LB, Guan XQ, Zhang XL, Zhu J, Zhang YC.) where the issue of neutrophilia with bleeding also came up.
Keep up the good work and many thanks for sharing.
Molti ringraziamenti per tutte le sue registrazioni. Sono un dottore medico ma non specializzato in Respiratorio! Sono interessato per vedere che c'è il lavoro di scienza fondamentale essendo fatto. Abbiamo bisogno della causa di questo per più ha mirato a dei trattamenti.
Ho letto appena l'estratto ed attendo il testo pieno. Il commento di dovere per avere un conto di cellula più basso bianco mi ha ricordato dell'articolo (Pediatr Pulmonol. 2008 Nov;43(11):1067-71. Maintenance therapy with dose-adjusted 6-mercaptopurine in idiopathic pulmonary hemosiderosis.
Luo XQ, Ke ZY, Huang LB, Guan XQ, Zhang XL, Zhu J, Zhang YC.)
Dove la questione di neutrophilia con l'emorragia è salita anche.
Mantenere il buono lavoro e molti ringraziamenti per il condivisione.
Regards,
Miriam
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evi
New Member
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Post by evi on Feb 7, 2011 4:44:50 GMT -6
Dear Miriam,
yes, increasing neutrophilia and all its factors makes sens. VEGF - (Vascular endothelial growth factor) in IPH, Matrix Metalloproteinase -9 in IPH are very interesting. All these are little steps to take more perspectives in the dark of IPH.
It would be very interesting the genetic backgound of all patients with IPH - are there autoimmunologic disseases in the kinship? (like SLE - systemic lupus eryt.. etc?)
Many thanks - these conversations gives a lot of inspirations!
Regards
Evi + Hubert
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Post by miriam on Feb 7, 2011 16:48:47 GMT -6
Dear All,
I found these articles. I'm trying to find stuff on IPH & TNF (tumour necrosis factor) and IPH & IL6 (interleukin 6).
1) Mast cells in pulmonary haemosiderosis
J DOLAN, S McGUIRE, E SWEENEY, J BOURKE, AND 0 C WARD
2) comorbid disorder of idiopathic pulmonary hemosiderosis and immune mediated idiopathic thrombocytopenic purpura. Sogame, Kimura, Okamatsu and Takehiro
3) Specificity and Sensitivity of Hemosiderin-Laden Macrophages in Routine Bronchoalveolar Lavage in Children
Zeynep N. Salih, MD; Afreen Akhter, BA; Javeed Akhter, MD (Arch Pathol Lab Med. 2006;130:1684–1686)
4) Hemolysis, Toxicity, and Randomly Amplified Polymorphic DNA
Analysis of Stachybotrys chartarum Strains
STEPHEN J. VESPER,1* DORR G. DEARBORN,2 IWONA YIKE,2 W. G. SORENSON,3
AND RICHARD A. HAUGLAND APPLIED AND ENVIRONMENTAL MICROBIOLOGY,
July 1999, p. 3175–3181
5) S Louie, L A Russell, R B Richeson, 3rd and C E Cross
Circulating immune complexes with pulmonary hemorrhage during pregnancy in idiopathic pulmonary hemosiderosis.
Chest 1993;104;1907-1909
6) A role for MCP-1/CCR2 in interstitial lung disease in children
Dominik Hartl1, Matthias Griese1, Thomas Nicolai1, Gernot Zissel2,
Christine Prell1, Dietrich Reinhardt1, Dolores J Schendel3 and
Susanne Krauss-Etschmann* Respiratory Research 2005, 6:93 doi:10.1186/1465-9921-6-93
Happy reading,
Miriam
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Post by miriam on Feb 8, 2011 17:34:17 GMT -6
Hello all,
More articles: Milman N, Pedersen FM. Idiopathic pulmonary he-mosiderosis. Epidemiology, pathogenetic aspects and diagnosis. Respir Med 1998; 92: 902-907
2. Saeed MM, Woo MS, MacLaughlin EF, Margetis MF, Keens TG. Prognosis in pediatric idiopathic pulmonary hemosiderosis. Chest 1999; 116: 721-725.
3. Kiper N, Göçmen A, Özçelik U, Dilber E, Anadol D. Long term clinical course of patients with idiopathic pulmonary hemosiderosis (1979-1994): prolonged sur-vival with low dose corticosteroid therapy. Pediatr Pulmonol 1999; 27:180-184
4. Cassimos CD, Chryssanthopoulas C, Panagrotidous C. Epidemiologic observation in idiopathic pulmonary hemosiderosis. J Pediatr 1983; 102: 698-702
5. Chiv JH, Wong KS, Hsiag H, Sheng-Dong Xu2, Chia-Yen Lin3. Idiopathic pulmonary hemosiderosis in a child: report of one case. Acta Paediatr Taiwan 2001; 42 (2): 101-104
6. Dua T, Chandra J, Jain M, Passah SM, Dutta AK. Idio-pathic pulmonary hemosiderosis. Indian J Pediatr. 2000 ; 67(9): 693-694.
7. Derbent M, Özçay F, Saatçi Ü,Galip San, Necil Kütükçüler. Severe iron deficiency anemia in a child with idiopathic pulmonary hemosiderosis: a case re-port. Turkish J Pediatr 2002; 44: 258-260
8. 8.Le Clainche L, Le Bourgeois M, Faroux B, Forenza N,Dommergues JP,Desbois JC et al. Long-Term out-come of idiopathic pulmonary hemosiderosis in chil-dren. Medicine (Baltimore) 2000; 79: 318-326.
9. McCormick LM, Goddard M, Mahadeva R. Pulmonary fibrosis secondary to siderosis causing symptomatic respiratory disease: A case report. J Med Case reports 2008 : 2 ; 257 -259
10. Am J Med Sci 1999 Jan;317(1):67-74 . Idiopathic pulmonary hemosiderosis. Cohen S 'Bronchoalveolar lavage during remission
showed increased numbers of neutrophils; the histologic study suggested that the
neutrophils are obligatory participants in the occurrence of lung bleeding. The
finding of the preacute phase and the role of the neutrophils in the acute
bleeding permitted development of a new hypothesis related to the
physiopathology of IPH. '
Take care
Miriam
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Post by lynda Trow on Jun 23, 2012 7:35:39 GMT -6
hi,
I have both IPH and coeliac, both diagnosed in the last 12 months I have asthma and hayfever, but neither of my parents have any autoimmune diseases. My mother now has age onset diabetes.
connection is questioned but not known, would be interested in anyone elses knowledge?
regards Lynda
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evi
New Member
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Post by evi on Oct 13, 2012 10:33:40 GMT -6
Hello to all, we made some ground research - now first results and questions. Please read the article in attachment! We are looking forward hearing from you and are ready to share our data and experience. Kind regards Evi and Hubert Attachments:
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Post by IPH NET on Nov 22, 2014 10:21:33 GMT -6
I found this link on the web. There are medical professionals doing research on Idiopathic Pulmonary Haemosiderosis! Idiopathic Pulmonary Haemosiderosis - World 1st Medical Treatment By Researchers At Queen Mary University London And University Of Leicester www.medicalnewstoday.com/articles/72840.phpCheck it out and let me know what you think. IPH-NET I have emailed the researchers involved in this. One is now in the US and the other is still working with the hospital in the UK. I hope to have some news soon. IPH-NET |
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