I am not a doctor or a medical professional. I am, among other things, a writer with severe hemophilia A and a tolerized inhibitor. Following the article I wrote in January summarizing the SIPPET abstract, the National Hemophilia Foundation (NHF) engaged me to write a patient-facing article summarizing NHF’s Medical and Scientific Advisory Council’s (MASAC) recommendation in response to SIPPET’s publication.
In agreeing to do so, my goal was to help patients and families understand MASAC’s recommendations related to the SIPPET study on inhibitor formation, and to empower their decision making in choices about care.
To improve my understanding of the issues at hand, I was invited to be a guest listener on MASAC’s conference calls discussing SIPPET and was copied on the ensuing emails with draft after draft of what is now a completed recommendation. I hope this article helps provide some clarity on what is admittedly a complicated set of study results. To that end, the article is written in my language, not in dense medical-ese.
Once again, I am not a medical professional, and any decision about you or your child’s medical care should be made by you, your family, and your child in conversation with your usual healthcare team.
One of the many challenges that come with a hemophilia diagnosis is that you sorta kinda have to become something of a medical expert. And an insurance expert. And a packing expert (factor can fill a suitcase in no time!).Read More