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Preparing for appointments
Talking about a sub-optimal treatment response with your doctor
Preparing for appointments
Talking about a sub-optimal treatment response with your doctor
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If you are experiencing a sub-optimal response, your priority should be getting your PNH under control. Get to the heart of the issue and talk to your doctor about how you really feel, what your treatment goals are and if your treatment should be re-evaluated.
Think you might have a sub‑optimal treatment response?
Get the conversation guide to ensure your time with your doctor counts. This guide helps you capture symptoms, questions, and concerns so nothing is overlooked.
Plan for your conversation
Simple prompts to help you explain symptoms, treatment goals, and experiences clearly.
Make the most of your appointment
Capture important questions, notes, and concerns to discuss with your doctor.
Explore treatment options together
Use the guide to review current therapies and learn about alternatives.
PNH perspectives
Hear from real patients and doctors
Advice from a hematologist: "Learn to complain about your PNH"
How you feel is as important as your blood test results when it comes to recognizing a sub-optimal response.
Advice from a hematologist: "Learn to complain about your PNH"
How you feel is as important as your blood test results when it comes to recognizing a sub-optimal response.
Hear how Catherine navigated a sub-optimal treatment response
When Catherine suspected a sub-optimal treatment response, she learned everything she could about PNH in order to advocate for a different treatment.
Hear how Catherine navigated a sub-optimal treatment response
When Catherine suspected a sub-optimal treatment response, she learned everything she could about PNH in order to advocate for a different treatment.
See how Barry advocated for himself after his PNH diagnosis
Even before Barry was diagnosed with PNH, he discovered that it was important to be prepared for appointments and persistent in the search for answers.
See how Barry advocated for himself after his PNH diagnosis
Even before Barry was diagnosed with PNH, he discovered that it was important to be prepared for appointments and persistent in the search for answers.