What is Hemophilia
Hemophilia or haemophilia is the name of any of several hereditary genetic illnesses that impair the body's ability to control bleeding. Genetic deficiencies (or, very rarely, an a...
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Understanding Hemophilia
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Hi, Im a nursing student at the University of Southern Mississippi. Im doing a thesis on hemophilia in children and the nursing role in help manage this bleeding disorder. I just wanted to get some parents and children perspective on living with hemophilia and how nurses help with managing this disorder. I don't have to use any names just would like to get an inside perspective.
Thanks Posted on 08/01/08, 06:08 pm |
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i don't have any words of wisdom, i'm not a parent yet however these books are great resources.
http://www.amazon.com/s/ref=nb_ss_... GL with your thesis 
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Thank you so much for your help.
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hi you may well find my book ' Missing Factor' - a personal experience of hemophilia(available on Amazon) helpful. Marie Berger
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The very best of luck and success with your thesis. i would be extremely interested in the outcome. Marie
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I was floored to find my son had a "genetic disorder" never heard of Hemophila before till 2 years ago when my son was born. Now I know more than most "regular doctors and nurses" My son developed an inhibitor at 7 months old and a month long stay at the hospital.
What I can say is I have and know no one with the same issues and I am managing just fine, I consider us lucky because at least we know what he has and have some ways of controlling things. I dont believe God would have given me tis challenge if he did'nt think I could handle it so we do what we can and pray every day for my sons health and safety. Good luck and I would be happy to help in any way possible Michelle
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I just want to thank everyone who is supporting my thesis on Hemophilia. I wish I could ask you so many questions but there are rules and regulations about talking to parents and their children. I have to get it approved by the international review board if I'm going to include any information into the paper and it's been a tough road. However, I still wouldn't mind getting your opinions to help me out. Once again thanks. I hope everyone just stay strong.
God Bless Conitra
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My book(see below) is about living with hemophilia in the family - how the unexpected diagnosis affected us as parents and my other 4 kidsand how we all learned to live with this unpredictable condition. Nathan, who is now 28, has written the last chapter himself. I am seriously not just looking to publisize my book which already sells well, but just to help you with your thesis as it deals with exactly what you are researching. I hope your work is going well. Marie
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Hi, Just wanted to wish you luck and mention that there is another bleeding disorder that often remains forgotten, it is von Willebrands Disease. It has Types 1, 2 w/ multiple subtypes, and 3. This bleeding disorder affects both men and woman and often many people have it an never know. Again, just something to keep in mind when looking to do your research. Thanks for letting me advocate.
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my 15 year old son has severe Hem. B. My suggestion is that all areas of life be shared by all members of a treatment team. i.e. physical, emotional, financial, higher education, changing over to the adult system, insurance, support groups etc. Good luck with your thesis and thank you, in advance, for working with these Great Kids!
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