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Post by IPH NET on Nov 28, 2012 18:41:03 GMT -6
Matt, Check your account again. It is activated. If you have any issues let me know. Dear IPH-Net, although my son might be much better than your daughter having O2 saturations above 95 he shows a similar condition. Before he is bleeding he is having a lot of pain. After the bleeding the pain is much better and he is just tired. Also, can you do me a favor? My account with the username "Matt" is still pending, so I can't pm anybody, however I would really like to do so. Best wishes. Matthias I found the problem, should be working now.
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Post by HLB on Dec 5, 2012 14:02:50 GMT -6
Hi I'm the creator of a page on FaceBook, I am 18 and have IPH. I was diagnosed at 4 and was put on (I think) 10mg of prednisone a day, which lessened to 2.5 every other day by age 14, then nothing, and since then I have not had to go back to steroids The reason I made the page was to find others like myself, to be able to share experiences etc. and for our loved ones to be able to talk to each other and share their worries, thoughts, feelings with each other and for everyone to get support, because I may not have understood or really known that the doctors gave me a sell by date of age 10, but my family did, and they had no-one to talk to who knew what they were feeling: no one to say, well actually, I had the same, or my daughter had the same but they survived. www.facebook.com/PulmonaryHemosiderosisSupportthis is a link to my page, please like and share it if possible as I hope to reach as many people as possible. thanks, HLB
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Post by IPH NET on Dec 5, 2012 23:30:15 GMT -6
Hi I'm the creator of a page on FaceBook, I am 18 and have IPH. I was diagnosed at 4 and was put on (I think) 10mg of prednisone a day, which lessened to 2.5 every other day by age 14, then nothing, and since then I have not had to go back to steroids The reason I made the page was to find others like myself, to be able to share experiences etc. and for our loved ones to be able to talk to each other and share their worries, thoughts, feelings with each other and for everyone to get support, because I may not have understood or really known that the doctors gave me a sell by date of age 10, but my family did, and they had no-one to talk to who knew what they were feeling: no one to say, well actually, I had the same, or my daughter had the same but they survived. www.facebook.com/PulmonaryHemosiderosisSupportthis is a link to my page, please like and share it if possible as I hope to reach as many people as possible. thanks, HLB Thank you for putting the page on FB we need all of us to shout out and get IPH recognized as a rare disease (Hello NORD/Eurodis.....I have had countless exchanges with them but they want us to get into the 501c3 parameters before they will even consider) My daughter who was diagnosed at 3 had a sell date of 5 at the time.....but she is thriving and has two healthy sons. As a father I read the only book at the library at the time.....didnt tell her mother, but I knew the doctors had it on their minds. I get kind of feisty with them on FB, but if we don't we will lose more of our loved ones. If you havent registered on here please do, we have so many patients, parents, caregivers that can share information and resources. Thanks again for your page and I will do all I can to partner with you and bring more help into the fold.
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Post by cooper on Aug 21, 2013 4:06:16 GMT -6
Hi All,
My son it 8 1/2 and has had two periods of over 12 months of remission. Since March this year he has begun having an ongoing slow bleed that requires regular transfusions, he has a low walking tolerance and has only small periods off his oxygen. We have today had the talk with our specialists regarding arranging an information session with the transplant specialists. He has been on mercaptopurine for about 4 years but this was changed and tomorrow he is starting oral cyclophosphamide. I know there are a few of you with children on this and wanted some feedback on success. If this doesn't work in the next month this may change again so any information on what you are on and what seems to be working would be extremely helpful. I would also love to hear from those who are out of adolescent and are living with the after effects. Did you grow out of the condition or was there something that you believed help. Any information you can share is greatly appreciated.
We have another check up in a month and I want to take as much information as I can. My doctor uses google for information on IPH and we all know how useless that is! The only useful answers are with all our stories as we all live it one way or another each day.
Thanks all for your ongoing help, Lori Cooper
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Post by Jen on Sept 23, 2015 1:54:22 GMT -6
Hello Any adults with the disease?. Im 44 and was diagnosed in june 2015.
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Post by IPH NET on Nov 27, 2015 19:57:13 GMT -6
Hello Any adults with the disease?. Im 44 and was diagnosed in june 2015. Hi Jen, We have adults with IPH. If you are having trouble getting on here email me at iphnet@hotmail.com or find us on Facebook search for IPH NET. Anything we can do to assist you please feel free to ask. Best regards, IPH-NET
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Post by spottywott on Jun 8, 2017 8:01:01 GMT -6
Hi all,
I am 21 years old from New Zealand and have recently been diagnosed with IPH... It is so good to find this place, they believe I am the only one at current in New Zealand and it's really good to have a place where I can talk to other people who relate... I have never felt so alone... Thank you all for sharing your positive information etc. I look forward to talking with you more and learning !
Bye for now,
Hope x
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Post by IPH NET on Sept 5, 2017 16:58:15 GMT -6
Hi all, I am 21 years old from New Zealand and have recently been diagnosed with IPH... It is so good to find this place, they believe I am the only one at current in New Zealand and it's really good to have a place where I can talk to other people who relate... I have never felt so alone... Thank you all for sharing your positive information etc. I look forward to talking with you more and learning ! Bye for now, Hope x Thank you for joining the forums. I have sent you a PM with some information that may be helpful. Please feel free to look at all the messages and interact. Best Regards IPH NET
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