How you can help manage your PNH

Having the right information, resources, and support is great, but the most important person on your team is you.

So how can you take an active role in managing your PNH?

First, talk to your doctor

Be honest with your doctor and tell him or her details about your symptoms, even if you don’t think they’re related to PNH. You’ll want to be prepared with questions when you go. Here’s a printable list to take with you.

Download our Doctor Discussion guide

Doctor talking to patient
Collage of patient support materials

Get involved and be informed

Be sure to read any materials your doctor gives you, including brochures on lifestyle changes and any other materials on PNH that may be helpful to you. You should also take advantage of the resources you have available to you, including the symptoms tracker.

Know your numbers

There are blood testsBlood test is a test done to look at parts of the blood. Examples of tests include complete blood count (CBC), lactate dehydrogenase (LDH), and high-sensitivity flow cytometry. Results from these blood tests provide information about your PNH.3,4,10,16 that measure how much hemolysisHemolysis is the destruction of red blood cells by the body’s natural defense system. Hemolysis is the main cause of the signs, symptoms, and serious health problems in PNH, including some that are life-threatening.4,7,17 is happening in your body. Be sure to be tested regularly so you and your doctor can monitor your PNH.11

Approximate hemoglobin concentration in mg/dl

Keeping track

You may not notice the minor changes in your symptoms from day to day. But it’s important to keep track of how you feel. Your symptoms, combined with lab results, will make your doctor aware of changes in your health. If your symptoms change or increase, contact your doctor right away.

It’s also important to track changes in your lifestyle over the course of your disease. While small changes to your diet or exercise routine may not seem like much, they can have an effect on how your doctor thinks about your disease.

Patient/checklist

Symptom tracker

Download PDF

Get personal support between visits

OneSource™ Case Managers are here to help. OneSource is a personalized program that provides disease information, community resources, and ongoing support for patients and their caregivers. OneSource is staffed by Alexion Case Managers, all of whom are registered nurses with extensive clinical experience.

Contact OneSource

Nurse with headset