How could I prepare for my appointments?
Communication is key to getting the most out of your appointments. Try the following:
Share how you've been feeling (symptoms)
What symptoms have you been experiencing over the past week?
Align on your treatment goals
What do you want to accomplish with treatment?
Be open about your treatment and any related challenges
What are your current and/or past treatments for PNH?
Don't be afraid to ask your questions or share concerns you may have about your PNH or treatment.
Openly communicating with your doctor can help them make treatment recommendations that are tailored to you.
What are other people's experiences with PNH?
Watch Barry Katsof's inspiring story
When Barry Katsof was diagnosed with PNH in 2003, the Montreal native quickly learned the importance of being proactive and advocating for himself when living with a chronic illness. Now, in his 70s, Barry enjoys an active lifestyle and supports other people living with PNH through his non-profit organization, the Canadian Association of PNH Patients.
In this video, Barry shares his personal story, including the early signs of his disease, how he was diagnosed, the daily impact of PNH, his treatment experience and offers advice for those who have been recently diagnosed.