I’m a new mom and my husband and I just learned that our baby has hemophilia A. We are overjoyed at becoming parents and overwhelmed with next steps. Could you offer tips for building a relationship with a hematologist?
Â Dear Mom,
You’ve come to the right place! Knowing where to go, who to ask for, and what to expect is important. HFA has several resources for individuals and parents to help you build a relationship with your medical providers and make the most out of your visits.
- First, if you don’t already have a hematologist, refer to this Dear Addy post on finding care in your area. Consider establishing a relationship with your local Hemophilia Treatment Center (HTC). HTCs are federally-funded, specialized health care centers that bring together a team of doctors, nurses, and other professionals with expertise in treating people with bleeding disorders. You can find a list of HTCs on the website of the US Centers for Disease Control and Prevention.
- HFA’s Clinic Communications Toolkit is a great place to start as you prepare for your first and subsequent visits. Included in this toolkit is a Comprehensive Clinic Checklist and Creating a Calm Clinic Visit. These guides cover everything from who’s who among HTC staff, to what questions to ask (and to whom), and a packing list.
- Read “Information is Key: Navigating the Medical Field“, an article published in HFA’s print newsletter, Dateline, on roles in the bleeding disorders community and what to expect when considering factor replacement products. Your HTC will be a valuable resource for discussing treatment options.
- Check out HFA’s Blog, Infusing Love: A Mom’s View. This blog features personal stories from mom’s whose kids are affected as well. You are not alone in your hemophilia journey.
For more information, visit HFA’s webpage “Newly Diagnosed” or reach out to HFA’s Families Program. You are your child’s best advocate!
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HFA frequently receives questions from the bleeding disorders community related to advocacy issues. The questions often impact the entire community. In an effort to reach the largest audience possible with our responses to these widely applicable questions, HFA developed “Dear Addy.” Questions submitted to this column are edited in order to protect privacy and should be considered educational only, not individual guidance.