If this is your first visit: Please check the links on IPH, forward them to your physician, keep them handy in case of an Emergency Room visit!
Thank you all for your kind words and patience while I am able to concentrate on this website again! I know it has been forever since there have been updates and a newsletter, but just bear with me as this site is being updated
REMEMBER August is Idiopathic Pulmosiderosis Awareness Month!
SAVE THE DATE! 17 August 2019 INTERNATIONAL IPH AWARENESS DAY
Last year's online IPH Awareness Day had a great turnout and we were internationally recognized!
Welcome to the newest mirror site for IPH-NET. I would like to thank TRIPOD for the free webspace. Just remember the url for this site is https://iphnet.tripod.com/
NEWS AND UPDATES
NEWS: 08-03-2018
The Wikipedia page on Idiopathic Pulmonary Hemosiderosis has been updated!
Many thanks to the fine people at Wikipedia for adopting the IPH Wiki.
http://en.wikipedia.org/wiki/Idiopathic_pulmonary_haemosiderosis
PLEASE READ THIS!!!!
UPDATES
03-03-2016.....
IPH-NET is now on Facebook, Twitter, and MySpace!
http://www.facebook.com/iphnet
http://www.myspace.com/iph-net
03-03-2016......For the FIRST time, there is an IPH message board!
This is YOUR chance to get involved, take advantage of it!
It is not perfect yet, but it is up and running.
Take part, GET INVOLVED!
As many of the free webspace providers have closed recently, I am looking for more providers to mirror this site on. Check back for updates on this situation.
If you have a story, link, or anything you would like to have in the next newsletter, PLEASE let me know!
NEW FEATURE! I have added a
section that includes articles written by people affected by IPH and medical
professionals. A young man latemi@jazzcyber.com who was
diagnosed with IPH at 4 years old and is now 30 has graciously donated a copy of
his medical history to be published. A respiratory therapist JannW99@aol.com has
allowed me to publish a paper that she wrote on IPH. I have included her e-mail
address and a link to her website which has some very interesting respiratory
links. Click
here to view the menu
Links, links, links. If you have one that you would like included, e-mail me at iphnet@hotmail.com If you have a story, link, or anything you would like to have included, PLEASE let me know!
If you haven't visited this site recently you will notice some changes in the way this site is set up. If you are on a site or newsgroup where someone is inquiring about IPH, send them a message about this site. If you have a home page set up, please include this site in your links. I have been scouting the newsgroups and have found a growing number of people whose lives or a family member have been affected by IPH. When I was looking for information about IPH in 1983-84 there was one book in the library and NO easily accessible electronic medium for research. BTW, if you are involved with a foundation or non-profit organization and have a little insight into how to set one up, please e-mail me. I am working on setting up a national organization so that people and families affected by IPH have a greater voice in the health community.
REMEMBER!!!! GET INVOLVED! Your time and effort are worth more than any amount of money. If you can find documents in medical journals, doctors that are doing research on IPH, or even set up your own page about your experiences with IPH, another person looking for information may benefit. There are no IPH Telethons, media or sports figures with IPH, or congressional hearings. It is up to all of us to look for and share information with each other. If you have ANY information that you think may be beneficial to someone with or treating IPH, please send it to me at iphnet@hotmail.com
This page is always under construction. Please be patient, as this site evolves......with more links, sources of information, and other happenings in the treatment of IPH.
MIRROR SITES! I am working on
setting up additional mirror sites on other servers or separate new
sites.
Please add this site to your links list! If you would like to set up your own site on
IPH e-mail me at iphnet@hotmail.com and I will help with sources of FREE webspace!
WHAT IS IDIOPATHIC PULMONARY HEMOSIDEROSIS (IPH)?
Click on these links to find out about IPH
Idiopathic
Pulmonary Hemosiderosis: Two different presentations, One way to
diagnose
Singapore Medical
Journal Article
Case Based
Pediatrics For Medical Students and Residents
Chest Article - Prognosis in Pediatric Idiopathic Pulmonary Hemosiderosis
-NEW!-
Please send any and all links and articles concerning IPH to: iphnet@hotmail.com
IMPORTANT!
If you or a loved one have IPH and don't know where to
turn, these doctors and hospitals
are knowledgeable about IPH. If you have
any more doctors or hospitals to add to the list please e-mail
them to me and
I will add them to the list
I want to give a shout out to Scott Lloyd Baker for starting this list. Thank you so much! Let's make this list grow!
Doctors and hospitals that treat and are familar with IPH:
Please feel free to help me grow this list.
Dr. Renzoni & Co London England (Royal Brompton Hospital)
Dr Goldsack England- Kent
Dr Adobi Kanu, Lubbock, TX
New Cross Hospital, Wolverhampton, England
Dr Chinedu and Dr Pau, Royal London, England
Professor Joerg Mattes, Newcastle, Australia
Dr Shapera, Toronto, Canada
Dr. Martin Samuels Great Ormand Street London, England
Dr Joseph Parambil, Cleveland Clinic, Cleveland Ohio
Dr. Alan Harsh, Concord, North Carolina
Dr Michael Bye, New York
Dr Sofia Williams, Phoenix, AZ
Dr Monai Shah, Cummings, GA
Dr. Sinha, Alder Hey Children's Healthcare Hospital Liverpool, United Kingdom
Dr. Donnabeth Willey-Courand, University of Texas Health Science Center.
Dr. Eduard Chua, Cebu, Philippines
Dr. Lori Vanscoy, Children's Hospital of the King's Daughter, Norfolk, VA
Dr. Esmeralda Morales, Pediatric Pulmonologist, Lucile Packard Children's Hospital, Stanford, California
Dr. Anchalee Yuengsrigul at Children's hospital Orange County Orange.CA.
Dr. Samuel Goldfarb, at Children’s Hospital of Philadelphia
Dr. Hugo Escobar Children’s Mercy Hospital, Kansas City, Missouri
Dr. Greg Redding, Dr. Ron Gibson, Pulmonary Dept. Children's Hospital Seattle WA
Dr Andrew Wilson, Perth Childens Hospital Nedlands, Western Australia
Dr. Tonia Douglas Lady Cilento Hospital (also known as Queensland Children's Hospital) in Queensland
Dr.Philip Black, MD, Via Christi Hospital Saint Francis Wichita, KS
Dr Julias Vias Starship Children's Hospital New Zealand
Dr Robbie Winkler, Wellington Children's Hospital. New Zealand
MORE NEWS
There is a move to try to establish a NATIONAL ORGANIZATION for Idiopathic Pulmonary Hemosiderosis. If you have any experience working in, setting up, or know anyone who does, please direct them to my E-mail address: iphnet@hotmail.com
NEEDED---
I am looking for someone with some good links to sites concerning Gluten free diets.
If you have any questions or information regarding
Idiopathic Pulmonary Hemosiderosis, please e-mail me at: iphnet@hotmail.com
--NOTICE--
This page is for the distribution of information only! PLEASE contact licensed
medical professionals for diagnosis and treatment.
Links to
other IPH/Lung related sites on the Web
If you have any new links to IPH sites or any legitimate info, please e-mail them to me and I will post them ASAP. My e-mail address is: iphnet@hotmail.com
I would also like to thank Tripod and
the redirect services for allowing me to put this page up.
Thanks are
also in order to Hotmail for the E-mail address.
I am working on a special
page to thank the individuals, businesses, and organizations that have been so
generous in donating time, space and expertise in making this site happen. As of
right now, I would like to thank all of you, as your help could save the life of
my daughter or another person out there with this insidious disease.
If you find any broken links or errors, please contact the webmaster
© 1995-2019 iphnet@hotmail.com