Resources
If you would like to receive copies of these booklet please contact Kim Phelan at the Coalition for hemophilia B at hemob@ix.netcom.com
Booklets
Ask John
Booklet
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B2B Speaking from Experience2006 - The coalition for Hemophilia B (www.coalitionforhemophiliab.org)Colorful booklet for adults and teens share personal experiences of facto IX deficient patients. Developed using recommendations from Wyeth Consumer Advisory Board. User-friendly, packed with information designed to reach people already living successfully with hemophilia B. |
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B2B Speaking from Experience: A Guide for Mature Adults2007 - The coalition for Hemophilia B (www.coalitionforhemophiliab.org)Latest installment in the B2B series provides mature adults with helpful knowledge to make informed life decisions and remain healthy today and in the years ahead. Sponsored by Wyeth Pharmaceuticals (www.hemophiliavillage.com) |
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Factor Me In: Chad’s Story-My Life with HemophiliaWyeth Pharmaceuticals (www.hemophiliavillage.com)A man with hemophilia B discusses the importance of preserving joint health. |
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Hemophilia: An Internet Resource GuideWyeth Pharmaceuticals (www.hemophiliavillage.com)Review of hemophilia, the internet, and how to research hemophilia information through website devoted to hemophilia. |
Living with Hemophilia BWyeth Pharmaceuticals (www.hemophiliavillage.com)Colorful, comprehensive overview of hemophilia B. Topics include genetic transmission, carrier testing, treatment, resources, symptoms of bleeds, joint care, physical activities, hemophilia as your child grows. |
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A Family Guide to Hemophilia B2005 - CSL Behring Choice Support Center (www.cslbehring.com)Discusses unique challenges faced by families living with hemophilia B, including treatments and recent advances. Includes easy-to-understand dosing tools, exercise guides, easy-to-follow self-infusion directions. |
Ask John
This introduces me, John Taylor, to anyone who is interested in learning more about hemophilia, and to those parents and children who are still suffering because of the anxiety and the bleeds that accompany it. First, I want to tell everyone looking at this site that hemophilia does not have to define who you are. It is an aspect of your life, but does not have to define your life. With the proper treatment and dosage of factor this can be the reality of your life. I would like to share some of my personal experience.
I have been on prophylactic care since I was three years old. This means, since then, I have had twice a week infusions. At this point, I have infusions with a recombinant product twice a week. When I was young, I was infused by my pediatrician. When I was 7, by my mother, and now, that I am a teenager, I am able to infuse myself. This is not something anyone would choose, but it can be an encapsulated part of your life, rather than a chronic source of anxiety and pain.
Prophylactic treatment has allowed me to live a completely active life. I’ve been playing basketball since I was seven. This means I’ve been knocked down to the ground, slipped, and taken the blows that come from participating in this vigorous sport. In addition, I have never missed a day of school because of a bleed. In fact, since I’ve been on prophylaxis, I have never had a bleed.
When I read the brochures, and listen to experiences of families and their sons who live in a crisis mode, because of crisis care, I am deeply disturbed. There is another way to treat this disorder. Yes, we are all waiting for a cure. Whether it comes through gene therapy, or another less invasive treatment modality that would feel like a cure, but in the meantime we need to be able to fully participate in our own lives. When I listen to a teen-ager, like me, say he has to be careful he doesn’t have a bleed, I want him to know he doesn’t have to live with all that pressure.
I realize there are insurance problems, and problems concerned with home or self-infusion that need to be overcome. You have too many things to love and accomplish to let hemophilia hold you back. I hope you will share your concerns with me, so that together we can find a way to help.
Here are a few of my current projects:
* Presently, I am a Senior in High School and enjoy educating children who are writing reports about Hemophilia. If I can help you, let me know.
* Today, many Middle School and High School textbooks still refer to Hemophilia as a life threatening disease, stating that a small scrape can lead to life threatening consequences. I am advocating to have this changed.
* My compassion for those with hemophilia in underdeveloped countries motivated me to reach out to others. Recently, through donor contributions I was able to send 25,000 units of factor to a man in Pakistan who needed an operation.
* Many people have asked me how factor is made. I am currently working with a pharmaceutical company to create a video that will show the process from beginning to end. I am very excited about this project and will keep you informed.