How to recognize PNH

PNH is a serious and unpredictable disease. It 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.

There’s no one sign, symptom, or lab result that defines PNH. A person with PNH may feel fine, even when lab results show problems. To get the full story, signs and symptoms—as well as lab results—need to be watched closely.

What can be done about PNH

PNH can be life threatening. It is important to explore your options and address PNH early – and aggressively. By working closely with your doctor, you may be able to keep the risks of PNH at bay and live a fuller life.

What to look for in PNH

To get the full story, you, the patient, and the doctor can track signs, symptoms, and lab results:

• Symptoms:
  Stomach pain, difficulty swallowing, shortness of breath, fatigue, and erectile dysfunction, among others
• Lab results:
  Lactate dehydrogenase (LDH) as a measure of hemolysis, hemoglobin (Hgb) levels, and others

Hemolysis—The threat you can’t see

Ongoing hemolysis is the root cause of the signs, symptoms, and serious health problems of PNH.

Hemolysis happens when red blood cells burst. With PNH, hemolysis is always happening — even if your loved one can’t see or feel it.

And PNH is progressive, which means the disease can get worse over time.

Why is hemolysis so bad?

When red blood cells burst, they release hemoglobin. Hemoglobin is good for the body when it’s inside the red blood cells.

When it’s outside, it is very dangerous and can harm the body in many ways. Over time, it is very dangerous and can build up and cause serious health problems that are hard to predict.

These health problems can include:

• Kidney failure
• Blood clots
• Stroke
• Heart attack
• Damage to organs such as your liver, brain, and lungs

How will I know hemolysis is happening?

A person living with PNH cannot always see or feel hemolysis, which makes it tough to manage. The results of it often can affect the way the person feels and lives his or her life.

Left unmanaged, hemolysis can make the person feel very tired and weak. It can also lead to signs and symptoms like:

• Fatigue
• Impaired quality of life
• Trouble swallowing
• Stomach pain
• Shortness of breath
• Dark-colored urine
• Erectile dysfunction (ED)

PNH starts with the blood, but it can affect the entire body. If it’s not taken care of, PNH can lead to serious and sometimes life-threatening health problems.

With proper management, people with PNH can live fuller lives. Encourage your friend or family member to speak with their doctor, so he or she may be able to help keep the risks of PNH at bay.

Start with the right tools

Actively managing PNH can go a long way. Download these tools to help you take control or order them by calling OneSource™ at 1.888.765.4747.

Next: Helping others living with PNH.