High-Risk Patient Groups

Who Gets PNH?

Men and women, People of all races, People of any age.
PNH comes with a wide range of signs and symptoms that are often similar to other diseases. As a result, everyone experiences
PNH differently, making it tough to diagnose.

Understanding Your Risk

Symptoms of hemolysis

  • Difficulty swallowing
  • Stomach pain
  • Dark-colored urine
  • Impaired health-related quality of life
  • Fatigue
  • Difficulty breathing
  • Erectile dysfunction

Do you have Bone Marrow Dysfunction?

  • Aplastic Anemia
  • MDS (myelodisplastic syndrome)
  • Cytopenia

What is Unexplained Thrombosis?

  • Venous or arterial
  • Thrombosis without an identified cause

Resources

Victor's Story

 

Batina’s Diagnosis

 

Scott’s Diagnosis

 

Patient/Doctor Discussion Guide

Patient-Doctor Discussion Guide

Download the Patient/Doctor Discussion Guide for help with questions you may want to ask your doctor to learn more about PNH.

Symptoms/LDH Tracker Tool

Symptoms-LDH Tracker Tool

Track your symptoms and your lab results, including your LDH. The Symptoms/LDH Tracker Tool can help you and your doctor monitor PNH. Take it with you on every visit and discuss your results with your doctor.

Stay Connected

Symptoms of PNH

The diverse and common symptomatology of PNH can delay diagnosis. Find out about the variety of symptoms that can occur in a patient with PNH.

PNH Medical Expert PNH Medical Expert

Do you have any questions about PNH? Contact an Alexion Nurse Case Manager for more information.

Doctor Patton video

Watch Jeff Patton, MD, talk about how the ICCS and IPIG guidelines have helped to identify patients with PNH who would otherwise have been missed.