Shellye Horowitz, who has hemophilia, describes information she collects and documents to back up her positions when communicating with her doctors.
Transcript
Do not be afraid to advocate for yourself and make sure that you are documenting everything. Document pictures of bleeds. Document what works.
Document what doesn’t work, and then take that information to your treater so that they understand your bleeding story. It is so important for them to understand the way you bleed and how you bleed, and how you heal from bleeds. And often when things aren’t working, it’s because there’s a big disconnect in their understanding of your story.
