The hallmark symptom of hemophilia is bleeds: excess blood that often pools in joints such as the wrists, knees and elbows. We surveyed MyHemophiliaTeam members about their symptoms and found that many with hemophilia experience two additional symptoms at a high frequency: depression and pain.
The lifestyle of hemophilia may include stress about bleeds, pain, accidents, infusions, and stigma, and all of this can lead to depression or anxiety. 65% of respondents reported experiencing depression along with their hemophilia. Only 13% of them felt satisfied that their depression was being addressed by their medical team. Bleeding in the joints can cause long-term pain. 57% of respondents reported experiencing pain as part of their hemophilia. Only 38% of them felt satisfied that their pain was being addressed by their care team. One user reported a regular pain level that is "at least a '10' on the standard pain charts."
Our survey found two overlooked hemophilia symptoms:
Have you experienced depression or pain alongside your hemophilia? Is your medical team addressing these overlooked symptoms?
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