To better understand Journey to Know, let’s start by first talking about Better You Know (BYK). Better You Know is a program created for women, girls, and people with the potential to menstruate who are experiencing signs and symptoms of a bleeding disorder, but have not yet received a diagnosis. This initiative is aimed at helping the undiagnosed community seek out an end to the symptoms they are experiencing.
The Better You Know website houses many downloadable and printable bilingual resources, such as a menstrual tracking chart and a healthcare diary that helps you prepare for an upcoming doctor’s appointment. We encourage everyone to take advantage of these resources, bring them with you to your appointments, and start up a conversation with your providers. In addition to these resources, the Better You Know website also features a validated risk assessment tool, which will tell users if they are at risk for a bleeding disorder. If you test at risk, this is another helpful tool to print and take along with you to your doctor’s visits as you begin to explore the possibility of having a bleeding disorder.
But getting that conversation started can be difficult! Journey to Know (JTK) is a program that launched under BYK in 2022 and our goal is to make that conversation slightly less confusing. Through this program, we empower women, girls, and people with the potential to menstruate with knowledge on the basics of bleeding disorders and equip them with the proper skills to confidently advocate for their health needs. Journey to Know is comprised of two main components: Watch & Know and Stay in the Know.
Watch & Know features a series of eight educational videos that cover a variety of topics, from what bleeding disorders are, to how to advocate for a diagnosis with various health care providers. These self-paced videos are a great introduction to the community for people who are new to bleeding disorders.
Stay in the Know allows participants to sign up for an email and/or SMS check-in to assist them in their diagnosis journey. These messages are spread across the span of three months and give participants the opportunity to share where they are in their journey and reach out if they are facing any obstacles while seeking out their diagnosis.
We’re excited to share that Journey to Know will be relaunched in Summer 2024 and will feature updated messaging based on the feedback received from our initial JTK participants. This summer, we will also be launching Journey to Know in Spanish! Program participants will get access to eight new educational videos in Spanish, as well as a tailored SMS/email service fully in Spanish, to guide them on their journey towards a diagnosis.
If you or someone you know is experiencing signs and symptoms of a bleeding disorder, but don’t know where to start, Journey to Know might be the program for you!
To learn more about Journey to Know in English, sign up here.
While you can’t sign up for Journey to Know in Spanish quite yet, you can learn more about the program and our upcoming launch here.
