Start by talking with your doctor
It's easier to track and monitor your PNHA disease where red blood cells are created without certain protective proteins. This causes them to burst (a process called hemolysis) and can result in serious health problems. Signs and symptoms include stomach pain, difficulty swallowing, anemia, shortness of breath, and fatigue. Life-threatening complications from PNH include blood clots, kidney failure, and damage to organs. when you know how to speak with your doctor. Successful management of PNH starts by talking with your doctor. Be sure to tell the whole story.
- Tell your doctor about your symptoms, even if you don’t think they're related to your PNH
- Tell your doctor when the symptoms started and how often they happen
- Show your doctor where on your body you feel your symptoms
- Describe how bad your symptoms get
- If symptoms suddenly worsen, tell your doctor. Let him or her know if you are sick or stressed when it happens
It is also important for you to understand how PNH might affect you. After all, the more you know, the more you and your doctor can do to successfully manage your disease.
Some questions you might want to begin with include:
- What is PNH?
- What is the underlying cause of PNH?
- How is PNH diagnosed?
- How is PNH monitored/what do you look for?
These are only a few questions you may want to ask. For more information on questions to ask your doctor, access the interactive Patient/Doctor Discussion Guide by downloading the PNH Patient Resources app below, or view a printable version here.
You can also contact OneSource™ and speak to a Nurse Case Manager to learn more about PNH and to receive free personalized support as you manage the disease, every step of the way.
You can learn about PNH from actual patient experiences, discover more about the disease from doctors treating PNH, access tools to actively help you manage your PNH, find out where to connect with others at PNH community events, and tap into support from OneSource—anytime, anywhere.
Download the PNH Patient Resources app. Here you will find access to:
- Patient stories: Real patients share their experiences living with PNH
- Doctors' Insights: Listen to doctors who treat patients with PNH talk about aspects of the disease
- Tools to help you track and monitor your PNH:
- Lifestyle Tracker Tool: Track changes in normal everyday activities to help you understand how PNH has affected your life
- Symptoms/LDH Tracker Tool: Track your PNH signs, symptoms, and LDHAn enzyme found in red blood cells, released during hemolysis. Testing for LDH can help show how much hemolysis is happening in your body. test results
- Patient/Doctor Discussion Guide: Provides questions you may want to ask when talking about PNH with your doctor
- OneSource Patient Authorization Form: Allows a registered nurse from OneSource to work with you and share information about your medical condition with others to help you better manage your PNH
- Calendar of events: Provides the details of upcoming regional PNH meetings
To download, select your device:
Click on a word that is underlined with a light dotted line and an explanation of that word will appear.
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