Encourage doctor visits

PNH is manageable, and there’s a lot you can do to help. It may be difficult for someone with PNH to make and keep appointments to see the doctor. However, regular visits are important.

Caregivers cannot only help to make sure their friend or family member is able to get to their appointments, but they also can help track signs, symptoms, and lab test results, and ensure questions are asked and answered.

Discuss lab results

To understand lab results, you don’t need to learn another language. Remember, the doctor is there to help. So don’t be afraid to ask questions!

Here are a few questions to help you get started:

“What does this lab test mean?”

“Are the results normal?”

“What does it mean if my loved one’s results are above/below normal?”

“Is there anything we can do to get them within a normal range?”

Encourage your friend or family member to speak with their doctor about how to better manage PNH.

Help your loved one learn how to speak with his or her doctor about symptoms using the Doctor/Patient Discussion Guide.

Encourage healthy eating habits

Eating right is important for everyone, but it’s especially important for people with chronic illnesses.

Promote positive thinking

For some people with PNH, daily activities can be overwhelming. Limitations can be challenging for everyone involved, especially the person with PNH. Support from family and friends can make a big difference. Encourage your loved one to focus on what she or
he can do.

Seek community support

PNH is a disease, but you and your friend or family member with PNH are not alone. Encourage your friend or family member to connect with others who have PNH to help them learn about, cope with, and to take control of the disease. Many free resources are available. Call OneSource™ or access other resources to help them find support.

Get support every step of the way

Sometimes you may need to talk with someone who understands. In these times, you can reach out to OneSource at 1-888-765-4747 to speak with a registered Alexion Nurse Case Manager. They can answer your questions and even connect you with others like you who are caring for someone with PNH.