PNH Patient Viewpoints

Learn from actual PNHA disease where red blood cells are created without a protective protein. This causes them to burst (a process called hemolysis) and can result in serious health problems. Signs and symptoms include stomach pain, difficulty swallowing, anemia, shortness of breath, and fatigue. Life-threatening complications from PNH include blood clots, kidney failure, and damage to organs. patients Scott, Victor, and Batina's personal experiences living with PNH.
Through their viewpoints, you’ll gain a better understanding of PNH and learn how others are living and coping with this disease.

Scott's Experience 1 of 4

Diagnosis

Diagnosing PNH can be difficult. The signs and symptoms of PNH are different for everyone and often similar to other diseases. That can make PNH tough to diagnose. Learn how Scott's health got worse over several years before he was finally diagnosed with PNH.

Scott's Experience 2 of 4

Symptoms of PNH

PNH can get worse over time. PNH can get in the way of doing even the simplest things. Learn how Scott had to cope with his life-threatening disease as it got worse over the years, affecting the daily life that he once took for granted.

Scott's Experience 3 of 4

Supportive Care

Living with PNH can be a challenge. Being diagnosed with PNH is only the first step. Actively managing PNH is critical, and living with some treatment choices can be a trying experience. Hear about the challenges faced by Scott and his family as they tried supportive care for his PNH.

Scott's Experience 4 of 4

Take an Active Role

Stay informed to help manage your PNH. PNH can affect your life and the lives of the people who care about you. But even though PNH is rare, there are things you can do to help yourself and those close to you. Find out what Scott suggests for others living with PNH.

Victor's Experience 1 of 3

Symptoms of PNH

When PNH is left untreated, life 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.

Victor's Experience 2 of 3

Caregivers

Stay 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 to cope with his disease, and also how she coped—even in trying times.

Victor's Experience 3 of 3

You Are Not Alone

Connecting with others can help. PNH is a rare disease, so it's natural to experience feelings of isolation when you are diagnosed with it. Talking with others who have shared similar experiences and who understand can make a difference. See how support groups helped Victor overcome his feelings of loneliness, and how he's now helping others with PNH.

Batina's Experience 1 of 4

Symptoms of PNH

When PNH is left untreated, life 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.

Batina's Experience 2 of 4

Diagnosis

Diagnosing PNH can be challenging. The signs and symptoms of PNH are often similar to other diseases, making PNH tough to diagnose. For many years, Batina's disease progressed before she was finally able to give it a name.

Batina's Experience 3 of 4

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 had to turn to her family for support.

Batina's Experience 4 of 4

You Are Not Alone

Support is just a phone call away. Living with PNH can be difficult. For Batina, it became easier the day she learned about OneSource™. Find out about that day, and learn how Batina feels about this free support program.

Scott's Experience 1 of 4

Diagnosis

Diagnosing PNH can be difficult. The signs and symptoms of PNH are different for everyone and often similar to other diseases. That can make PNH tough to diagnose. Learn how Scott's health got worse over several years before he was finally diagnosed with PNH.

Scott's Experience 2 of 4

Symptoms of PNH

PNH can get worse over time. PNH can get in the way of doing even the simplest things. Learn how Scott had to cope with his life-threatening disease as it got worse over the years, affecting the daily life that he once took for granted.

Scott's Experience 3 of 4

Supportive Care

Living with PNH can be a challenge. Being diagnosed with PNH is only the first step. Actively managing PNH is critical, and living with some treatment choices can be a trying experience. Hear about the challenges faced by Scott and his family as they tried supportive care for his PNH.

Scott's Experience 4 of 4

Take an Active Role

Stay informed to help manage your PNH. PNH can affect your life and the lives of the people who care about you. But even though PNH is rare, there are things you can do to help yourself and those close to you. Find out what Scott suggests for others living with PNH.

Victor's Experience 1 of 3

Symptoms of PNH

When PNH is left untreated, life 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.

Victor's Experience 2 of 3

Caregivers

Stay 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 to cope with his disease, and also how she coped—even in trying times.

Victor's Experience 3 of 3

You Are Not Alone

Connecting with others can help. PNH is a rare disease, so it's natural to experience feelings of isolation when you are diagnosed with it. Talking with others who have shared similar experiences and who understand can make a difference. See how support groups helped Victor overcome his feelings of loneliness, and how he's now helping others with PNH.

Batina's Experience 1 of 4

Symptoms of PNH

When PNH is left untreated, life 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.

Batina's Experience 2 of 4

Diagnosis

Diagnosing PNH can be challenging. The signs and symptoms of PNH are often similar to other diseases, making PNH tough to diagnose. For many years, Batina's disease progressed before she was finally able to give it a name.

Batina's Experience 3 of 4

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 had to turn to her family for support.

Batina's Experience 4 of 4

You Are Not Alone

Support is just a phone call away. Living with PNH can be difficult. For Batina, it became easier the day she learned about OneSource™. Find out about that day, and learn how Batina feels about this free support program.

  • Diagnosis
  • Symptoms of PNH
  • Supportive Care
  • Take an Active Role
  • Symptoms of PNH
  • Caregivers
  • You Are Not Alone
  • Symptoms of PNH
  • Diagnosis
  • Caregivers
  • You Are Not Alone

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OneSource Talk to Someone

A registered nurse from OneSource™ is available to help answer your questions about PNH and connect you with other people who have PNH, just like you. Call 1.888.765.4747 or e-mail OneSource now.

PNH Patient Resources app

Record any changes in lifestyle you’ve experienced since your diagnosis with PNH using the Lifestyle Tracker available for download via the PNH Patient Resources app, and share your results with your doctor.

PNH Expert Doctor Friedman video

Hear Dr. Ellen W. Friedman, a specialist of blood and blood diseases, explain how defective red blood cells form in PNH patients.