| Speak your truth if you are having breakthrough bleeds with your current hemophilia A therapy |
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| aA study asked people with hemophilia how many bleeds they had in the last 2 weeks, and then checked if the answers matched what was recorded in their medical records. These results might show that some bleeds are not always reported to the doctor. Limitations of this data may include patient's willingness to report their bleeds, whether patients accurately recalled their number of bleeds, or the correctness of their medical records. |
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| Do you report all of your bleeds? |
| Some bleeds may not be reported to doctors. A study found that people reported more bleeds in a survey than what was recorded in their medical records.b |
| All bleeds are worth discussing with your health care team. Bleeds that go untreated over time can cause long-term joint damage. |
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| bA study asked people with hemophilia how many bleeds they had in the last 2 weeks, and then checked if the answers matched what was recorded in their medical records. These results might show that some bleeds are not always reported to the doctor. Limitations of this data may include patient’s willingness to report their bleeds, whether patients accurately recalled their number of bleeds, or the correctness of their medical records. |
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| Do you worry about |
| breakthrough bleeds? |
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Despite advancements in therapy |
| 51% |
| Had 1 or more spontaneous bleeds during 18 months of follow up |
| based on a study of 70 people on non-factor therapy that works like factor 8c |
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| cIn a study conducted by the Israeli National Hemophilia Center, 70 people with hemophilia A who had received prophylactic factor 8 mimetic therapy. The study analyzed the number of spontaneous and traumatic bleeds over 18-month follow-up period. |
| In another study with factor therapy prophylaxis over the course of a yeard |
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| dFrom July 2023 to February 2024, people with hemophilia A and their doctors took a survey about managing hemophilia and the challenges with current treatment. In total, 62 doctors and 348 patients with hemophilia A completed the survey. Among the patients with bleeding data of more than 1 year, 28 were using EHL treatment. This study only included patients receiving hemophilia care, which may not reflect the full range of patient experiences, and since it looks at data from a single point in time, we are unable to observe how health conditions might change over time. |
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| When it comes to your hem A, |
| You shouldn’t have to compromise |
| Explore talking points to deepen conversations with your doctor |
| In the future, I’m looking for: |
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Prevent joint bleeds so I have better mobility and less pain |
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Improve current target joints (a joint that has 3 or more spontaneous bleeds within 6 months) |
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Have less anxiety and worry about bleeds when planning important activities |
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| Researchers are investigating treatments for tomorrow |
| by exploring different ways to prevent bleeds. |
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