This site is intended for US audiences only. If you are a resident of the European Union, please click here for the EU version of our site.
PNH Symptoms
Keep in Mind What’s Out of Sight
Quick facts about PNH signs and symptoms.
- Not everyone with PNH has the same experience or feels the same way
- The symptoms you can’t see or feel can be the most dangerous
- You may feel fine but still have serious health problems
- Keep track of your signs and symptoms and share them with your doctor
PNH is just like an iceberg—what you can’t see or feel can hurt you the most.
Know yourself. Know your symptoms.
The signs and symptoms of PNH can be silent and unpredictable. They affect everyone differently, and they can change from day to day.
Even when you can’t see or feel symptoms, you can still be at risk of serious health problems.
Learn from real-life PNH patients
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.
The symptoms of PNH can affect your entire life, both physically and emotionally. Find out how Victor’s PNH symptoms affected him.
Next: How can I manage PNH?
MYTH: My PNH is only bad when I don’t feel well
With PNH, you can have serious health problems even if you feel fine. Be aware of how you’re feeling and let your doctor know. This will help you both manage your PNH in the best way possible.
TRUTH: Less hemolysis can result in improved symptoms and better quality of life
Because most of the dangers of PNH are caused by ongoing hemolysis, lowering it is a primary goal of managing PNH. Speak with your doctor about what you can do to make this happen.
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.