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.


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 tests that measure how much hemolysis is happening in your body. Be sure to be tested regularly so you and your doctor can monitor your PNH.11

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.

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 have extensive training and experience.