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Helpful Resources
Helpful Resources
Learn from real-life PNH patients
Discover Victor and Batina’s personal experiences in living with PNH. Through their real-life accounts you’ll gain a better understanding of the disease, and find helpful ways of managing PNH and finding support.
Victor’s experience
Symptoms of PNH
Left untreated, life with PNH can be difficult
The symptoms of PNH can affect your entire life, both physically and emotionally. Find out how Victor’s PNH symptoms affected him. View video.
Caregivers
Staying positive as a caregiver
When you care for someone with PNH, staying positive can be difficult. Find out how Victor’s wife, Stephanie, helped him manage his disease, and also how she coped—even in trying times. View video.
You are not alone
Connecting with others can help
Because it is a rare disease, it’s natural to experience feelings of isolation when you are diagnosed with PNH. Talking with others who have shared the same experiences and who understand can make a difference. See how support groups helped Victor overcome feeling alone, and how he’s now helping others with PNH. View video.
Batina’s experience
Symptoms of PNH
Left untreated, life with PNH can be difficult
PNH can make it hard to live life to the fullest. Find out how PNH symptoms affected Batina’s life, from running simple errands to her role as a parent. View video.
Diagnosis
Diagnosing PNH can be challenging
Because the signs and symptoms of PNH are often similar to other diseases, PNH can be tough to diagnose. For many years, Batina’s disease progressed before she was finally able to give it a name. View video.
Caregivers
Sometimes you need to ask for help from those close to you
PNH can drain the energy you need for everyday activities. Don't be afraid to ask for help. Find out how Batina was able to lean on her family for support. View video.
You are not alone
Support is just a phone call away
Sometimes you just need to talk with someone who understands. Through OneSource, you can do just that. Find out how Batina feels about OneSource. View video.
Interactive Symptoms Viewer
Use this interactive tool to explore the signs and symptoms of PNH and what they mean.
Educational Materials
It’s okay to ask for help. Start with your doctor, OneSource™, and those closest to you to build a strong support team. There are also a number of free downloads and online resources you can use for information, advice, and support.
This brochure, written specifically for patients, may help answer some of the questions you have about PNH.
Educational Tools
Actively managing your PNH can go a long way. Download these tools to help you take control.
Record your symptoms, and track your lab results — including LDH levels. This tool can help you and your doctor monitor PNH. Bring it with you on every visit.
Use the Lab Tracker to check your LDH levels and other lab results over time.
Patient/Doctor Discussion Guide
Write down any questions you want to discuss with your doctor to help you remember them at your next visit. You can also make notes to refer to later when talking with your family or friends.
Patient Support Programs.
It’s okay to ask for help. There are a number of resources available online.