|
Post by IPH NET on Dec 10, 2009 19:19:15 GMT -6
Welcome to the IPH-NET message boards. This is a place to share stories, resources, articles, and most of all, help. This isn't for me, it is for all who could use information, hope, and help. This is a first for IPH-NET, so if you have any constructive help, please PM me.
|
|
|
Post by Lorraine on Dec 12, 2009 9:45:22 GMT -6
I think this is a great idea. I remember when my son was first diagoned 11 years ago..I wanted to speak with other parents who understood what I was going through. I wanted to know the best and worst scenarios but didn't know anyone in the same situation. My son Ryan is now 13 years old and pretty much full recovered. Has not bled in about 9 years now! Looking at him you would never know how sick he was! There is hope for everyone. ;D
|
|
|
Post by IPH NET on Dec 12, 2009 11:13:59 GMT -6
I think this is a great idea. I remember when my son was first diagoned 11 years ago..I wanted to speak with other parents who understood what I was going through. I wanted to know the best and worst scenarios but didn't know anyone in the same situation. My son Ryan is now 13 years old and pretty much full recovered. Has not bled in about 9 years now! Looking at him you would never know how sick he was! There is hope for everyone. ;D Thank you for being Member #1 here! If i can get Hotmail to let me email as I hope I can get the word out to others. If you wouldn't mind, let us know what treatments, doctors, anything that helped your son. I have a daughter (28 years old) that was diagnosed at 3. Had some bad episodes in the early years, but has 2 wonderful children and is married. It hasn't been a smooth ride, but she is a tough cookie. I told her about this board last nite but she was working and didn't get a chance to check it out. Once again, thanks so much for stopping by. I want this board to be a place where all people who have knowledge of IPH can share information freely and find help in others. IPH NET
|
|
|
Post by Dorte on Dec 17, 2009 7:50:29 GMT -6
Hi I have a daughter about 3 years have just been told that she has IPH I would like to know which treatment has been given to know that it worked? and how is made redirected? I'm afraid of losing my daughter.
|
|
|
Post by IPH NET on Dec 17, 2009 20:38:00 GMT -6
Hi I have a daughter about 3 years have just been told that she has IPH I would like to know which treatment has been given to know that it worked? and how is made redirected? I'm afraid of losing my daughter. First of all, thank you for visiting. As my daughter was diagnosed at 3 yrs old, I too had those fears. Over the last 25 years doctors from around the world have been studying, trying treatments, and having success in the diagnosis of IPH. Please feel free to look at the links on here, and on the website. Give them to your doctors. I am not a doctor, but a parent who knows what it feels like. There are many modes of treatment for IPH, from the standard prednisone, to medications used originally for anti-rejection of transplants. Any and all can PM me and I will try to help, as well as here where we can share. If there is anything I can do please let me know. Regards, IPH-NET
|
|
|
Post by iphsurvivor on Jan 1, 2010 20:42:24 GMT -6
Hello, I am very pleased to be able to post on a web board that provides more information and links regarding this disease, because as I am sure you know if you have made it here you have probably come across some really bland broad discouraging information, and although I cannot speak as a parent with a child diagnosed, I can speak as a 28 year old living with and surviving the disease, Iwould be happy to answer questions you may have for me. I will start off by saying, I was diagnosed when I was three, have been through it all. I am currently healthy, and I also have two healthy children of my own. If you have any questions please let me know. Thanks
|
|
|
Post by IPH NET on Jan 1, 2010 22:52:04 GMT -6
Hello, I am very pleased to be able to post on a web board that provides more information and links regarding this disease, because as I am sure you know if you have made it here you have probably come across some really bland broad discouraging information, and although I cannot speak as a parent with a child diagnosed, I can speak as a 28 year old living with and surviving the disease, Iwould be happy to answer questions you may have for me. I will start off by saying, I was diagnosed when I was three, have been through it all. I am currently healthy, and I also have two healthy children of my own. If you have any questions please let me know. Thanks Thanks for posting! If you have checked some of the IPH info circulating the web, including Wikipedia, with some help from the Internet community, we have changed the information out there into some concise information on diagnosis, treatment, and prognosis. When I started IPH-NET as a full time site in 1995 (and in previous incarnations on AOL and wherever I could swipe webspace since 1992) there were only a few sites with no information. Now there are many articles on IPH that were previously unheard of before the explosion of medical information published by the medical community. Much of it predates most of the people here, and provides a unique insight for a medical professional working to treat a "one in a million" diagnosis. If in your searches, you find any links that you feel may be of importance, please post them, and I will get them not only here but on the social networking sites. And please, feel free to join IPH-NET on the social networking sites that you feel comfortable with. Regards, IPH-NET
|
|