Information for Caregivers to Help Loved Ones With PNH

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. can take a lot out of someone living with it. As a caregiver, you can help support and encourage someone living with PNH and make it easier for that person to live with this disease. Learn as much as you can about PNH. And, ask how your loved one is feeling day to day. That way, you’ll know when to offer a helping hand.

PNH patient portrayal

Patients with PNH can live a long and full life, and there’s a lot you can do to help.

  • Encourage healthy living, including good eating habits and appropriate exercise
  • Ensure regular doctor visits
  • Help track signs, symptoms, and lab test results, and make sure questions are asked and answered
  • If your loved one asks, discuss his/her signs, symptoms, and lab test results with the doctor and 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?"
  • "What can we do to get them within a normal range?"

Seek Community Support

PNH patient portrayal

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

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PNH Patient Victor video

When you care for someone with PNH, staying positive can be difficult. Learn how Victor's wife, Stephanie, helped him manage his disease, and also how she coped—even in trying times.

PNH Patient Batina video

Hear more about LDH, the enzyme in the blood that doctors first measure when PNH is suspected.

PNH Patient Scott video

Learn how Scott's wife was inspired to learn about PNH and helped him through a difficult time.