Share Your Story: Marissa Johns
As a person with a bleeding disorder, attending your yearly appointment with your HTC can be stressful. At these meetings, your hematologist will ask about bleeding events, pain/discomfort, and bruising that may have happened over the past year. This is difficult for any person to remember, but as a person who menstruates, remembering each bleeding episode may be especially difficult. The importance of logging your menstrual cycle, including length of bleeding, average number of products used (saturated or non), and if clotting is present can significantly impact your current care plan. With this being an important factor in your care, how can you ensure that you are accurately tracking your bleeding so that you can report it to your physician?
The Hemophilia Federation of America (HFA) has a menstruation tracking tool kit available for viewing and download on their website (I will link the tool kit below). The tool kit includes two tracking methods (measuring volume loss or counting products), guides, helpful resources, definitions, and references. The tracking options are in the form of sheets that can be downloaded and either printed or completed digitally. Once completed, you can bring the physical copy to your appointment or send your logs directly to your physician. All logs are in a daily, weekly, or monthly format (your choice!). I have personally used the “Measuring Volume Loss” tracking sheets and find the picture diagrams very helpful when logging my bleeding. There is also ample room to leave notes that I may want to ask my physician (a helpful feature if the appointment is far away).
I have attached the link to the tracking sheets below. On the page, there are many great links to podcasts, educational videos, and other resources that I would recommend looking into!
*If you are interested in learning more, HFA has a program called Learning Central in which you can view specifically prepared courses for people who menstruate.
Link to Menstruation Tracking Tool Kit: https://www.hemophiliafed.org/resource/menstruation-tracking/
Link to Learning Central: https://www.hemophiliafed.org/learning-central/
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Before working with the National Bleeding Disorders Foundation, I worked in reproductive…
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