Bibliography

My Web Site Sources

*  Kinniburgh, Alan. "Bleeding Disorders." National Hemophilia Foundation 1948 20 Nov 2006 <http://www.hemophilia.org/ >

In the National Hemophilia Foundation website, there is basic information about hemophilia and other bleeding and clotting disorders. The website also provides funding opportunities for research groups as well as volunteer information for the public. This website was very helpful as a starting point. It gives good solid information about many blood disorders, but lacks its details.

 

*  "Bleeding Disorders, Factor Deficencies." Canadian Hemophilia Society. 2006. Canadian Hemophilia Society. 21 Nov 2006 < http://www.hemophilia.ca. >

The Canadian Hemophilia Society is a website based on hemophilia in Canada . The website includes tons of information on blood disorders, including hemophilia and factor deficiencies. I used the information on hemophilia C on this website. Since this website includes many details about factor deficiencies, it had many important facts about hemophilia C.

 

* "Chorionic Villus Sampling and Amniocentesis: Recommendations for Prenatal Counseling ." CDC: Center for Disease Control . 07/21/1995 . CDC: Center for Disease Control. 15 Jan 2007 <http://wonder.cdc.gov/wonder/prevguid/m0038393/m0038393.asp>.

I used this web page to understand the prenatal testing possible for diagnosing hemophilia. This page also gives a lot of opinion on when and why one should or should not take the testing. The information from this web site is used on my “Diagnosis” page.

 

My Written Sources

* "Kids with hemophilia bounce back." (LIFE) USA Today, Dec 14, 2005 p09D. Science Resource Center . Thomson Gale. 28 November 2006 < http://galenet.galegroup.com/servlet/SciRC?ste=1&docNum=CJ139770775 >

This article tells how a series of clotting factor injections are successful for the hospital's hemophiliacs. Doctors report excitedly how their patients can live normal lives and prevent themselves from gaining teenage arthritis and joint/muscle damage. I liked this article, because it gives a good update on how treatments are being conducted. The excerpt also shows the progress in hemophilia's treatments.

 

* Lusher, Jeanne M. "Hemophilia." Genetics . Ed. Richard Robinson. New York : Macmillan Reference USA , 2003. Science Resource Center . Thomson Gale. 26 November 2006 < http://galenet.galegroup.com/servlet/SciRC?ste=1&docNum=CV2642650115 >.

Lusher's Hemophilia has good information on how hemophilia affects the body. He covered pretty much all of the basics of Hemophilia, but the descriptions were not always very detailed or specific. Lusher's article was helpful in giving a basic knowledge on hemophilia, but lacked specifics such as how the blood clots.

 

* Hauser, Michael A. "Gene Therapy." Genetics . Ed. Richard Robinson. New York : Macmillan Reference USA , 2003. Science Resource Center . Thomson Gale. 26 November 2006 < http://galenet.galegroup.com/servlet/SciRC?ste=1&docNum=CV2642650095 >.

This article reports the progress of gene therapy and the wonders it could provide for mankind. Hauser explains how gene therapy works and which diseases it could cure. I found this article to be very biased, but still very helpful. He gives a good explanation of what gene therapy can do for hemophiliacs and other patients as well.

 

* Wilson, Jennifer F., MS. "Hemophilia." Gale Encyclopedia of Medicine . Ed. Jacqueline L. Longe. 3rd ed. Detroit : Thomson Gale, 2006. Science Resource Center . Thomson Gale. 28 November 2006< http://galenet.galegroup.com/servlet/SciRC?ste=1&docNum=CV2642413054 >.

Wilson 's encyclopedia entry, Hemophilia , gives an excellent explanation of the basics of hemophilia. She easily compares the normal clotting system with a hemophiliac's clotting system, and makes it simple to understand in its significance. This article was very influential to my paper, because it was the only resource that I have found that thoroughly explained how hemophilia works. Her article was easy to understand and was very influential to my paper.

 

* Nazarro, Ann Marie, Sally Owens, W Keith Hoots, Kelly L Larson. "Knowledge, Attitudes, and Behaviors of Youths in the US Hemophilia Population: Results of a National Survey." American Journal of Public Health Vol.96, Issue 9(2006): pg. 1618, 5 pgs.

This was a survey conducted among approximately four hundred fifty hemophiliacs. The surveyors asked these mostly young hemophiliacs about their awareness of hemophilia and its dangers. The information from this survey is helpful, because researchers and sponsors of hemophilia would know which aspects of the disease to focus on in order to raise more awareness.

 

* Mcphee, Stephen J; Papadakis, Maxine A.; Tierney, Lawrence M. "Hemophilia A." Current Medical Diagnosis and Treatment . 46th ed. 2007.

This article gave good up to date information of the current diagnosis and treatments of Hemophilia A. This article was particularly unique in that it seems to use newer or more current lab experiments with hemophilia rather than referring to another book or written source. I also like how this article only focuses on one part of hemophilia (the diagnosis) rather than trying to cover the whole topic. However, some of its terms were difficult and too technical for me to understand.

 

* Mannuci, Pier M., Edward G.D. Tuddenham. "The Hemophilias - From Royal Genes to Gene Therapy." New England Journal of Medicine Vol. 344, No. 23(2001): 1773-1779.

This journal article focused the most on treatments for hemophilia. Containing information about hemophilia's history and treatment's history, the article was very specific in current treatments and its corresponding pros/cons. This journal article was helpful to me in my “Treatment” section.

 

* Bolton-Maggs, Paul H B, K John Pasi. "Haemophilias A and B." The Lancet Vol 361(2003): 1801-1809.

This was a particularly confusing article that focuses mainly on the genes of hemophilia and the downfalls of its treatments. Although the article contained very specific and detailed examples, there were so many difficult medical and scientific terms that made the text hard to comprehend. Its information about inhibitors was however helpful in understanding the problems of factor replacement therapy.

 

* Potts, D.M., and W.T.W. Potts. Queen Victoria 's Gene: Haemophilia and the Royal Family . U.K. : Alan Sutto Publishing Limited, 1995.

This was a novel where Potts explored the historical and scientific significance of having hemophilia in the royal families. The book suggested an interesting twist to analyzing history, proposing hemophilia as a significant factor to the Russian Revolution and end to the Royal Dynasties. I only had the chance to read to the end of the introduction. This is because I did not want to put the entire history of Queen Victoria into my web site. I was mainly focused on the theories Potts introduced in the beginning of the book.

 

My Personal Sources

* Bui, Lam. Personal interview. 27 Nov 2006 .

Lam Bui is a coworker of mine who has a sister with hemophilia. Unfortunately, I could not interview his sister, but talking with Lam was just as influential. Lam's sister has a mild case of hemophilia. He says that hemophilia has never substantially hurt his sister, and that she lives a pretty normal life. However, he does describe an instance when his sister had a bloody nose that lasted for three hours.

 

* Weinstein, Mike. Personal, telephone, and email interview. Nov 2006 – Feb 2007.

My expo advisor was Mike Weinstein. He works at Amgen toxicology and can be contacted at mweinstein@amgen.com . We have emailed each other throughout November 2006 to February 2007. We have talked on the telephone twice on November 16, 2006 and December 5, 2006 . We met each other once on December 19, 2006 . Mike was extremely influential to my project, and has helped me throughout the whole ordeal. Despite our busy schedules, we still kept in contact, and Mike was always willing to help me out. Please see the “ about ” page for more information about my mentorship experience.

 

My Picture Sources

These are the links to the pictures that I have used throughout this web site.

 
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