Blog Archive

Sunday, May 20, 2007

New Inhibitor Book in Progress!

Well, I was hoping to be blogging from Nashville this weekend, as I was planning to attend the Inhibitor Summit meeting sponsored by Novo Nordisk. But, my 16-year-old daughter decided to attend her first prom after all, and that took precedent. She had a great time, and we were delighted to see a stunning young lady evolve out of perennial ripped jeans, sneakers and black t-shirts!

Did anyone reading this go to the Summit? If so, let us know how it was! These are really fantastic events that bring the inhibitor community in touch and closer, and I think by now we all recognize that this has been a neglected part of our community. Also, this is a great time to mention that I am now researching and writing the world's first inhibitor book for parents and patients. If you have inhibitors or a child with inhibitors, please let me know. We'd love to interview you and hear what you have to say. If you know of anyone with inhibitors who might like to participate, please have them contact us.



I just finished watching a nice video called "A Bright Future," geared for parents of children newly-diagnosed. It consists mainly of various testimonials by families of all types. It's warm and fuzzy, beautifully shot, with a soft, reassuring tone. It's sparse on information about hemophilia, so if you are looking for facts and figures, you might supplement this with some other materials. But I think if you know of new families, or if you are one, this will be a nice beginning. Typically, when there is a new diagnosis, most families don't usually want facts and figures anyway--they want reassurance. This was created by my friend Joe Caronna at Inalex Communications, sponsored by Baxter BioScience, and features a lot of people I know! That made it very fun to watch. Order it at www.inalex.com.

Have a great week!

2 comments :

Anonymous said...

I am a mother of 3 boys with severe hemophilia A. My oldest and youngest have had and has a high-titer inhibitor. I would like to share stories/experiences with raising children with inhibitors. While raising a child with severe hemophilia is already tough, dealing with inhibitors is a whole different world!

Jennifer said...

I am a mother of a 3 year old boy with severe hemophilia A with inhibitors. Many failed attempts to rid him of it, still haven't given up trying... looking to find more support and willing to help you with your book.

contact me jennifer.grace@hotmail.com

 
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