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Raise a ruckus for the hemophilia care you deserve

More videos

Advocacy keys

Unexplained pain

Hemophilia treatment

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Thomas Graham, a hemophilia patient advocate, shares why trusting your experience and speaking up in medical settings is critical to receiving the right care.

Transcript

I had an experience where I had to go to the emergency room because I was having very bad leg pain, and I was convinced I was having a bleed in my hip and that it was pressing on the nerve and causing the pain.

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And I knew what I was feeling, and I knew what sciatica felt like because I’d had that before, and I knew what a hip bleed felt like because I’d had that before. So I was sure.

And I had a resident who just looked me in the eye and insisted it was sciatica, and she was going to give me an anti-inflammatory, and I got all up and down her. I said, “You absolutely are not.”

And I raised a ruckus and I insisted that they call in the attending physician. And then I insisted that he call my hematologist because I was out of town. I made him call back to my doctor in town and get confirmation of the proper way to treat what was going on.

I had learned through previous experiences that the only way you’re going to get their attention is to make noise.

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