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Paroxysmal nocturnal hemoglobinuria (PNH) is a benign (noncancerous) blood disorder that causes you to have dark urine at night. PNH occurs when your immune system attacks your red blood cells. This then causes hemoglobin (protein that carries oxygen in your blood) to leak into your urine.

PNH can also lead to blood clots, anemia, kidney disease, and leukemia without treatment. Hematologists and advanced practice providers at Valley’s Center for Benign Blood Disorders specialize in detecting and treating this rare blood disorder.

Paroxysmal Nocturnal Hemoglobinuria Symptoms

Signs of PNH include:

  • Dark urine, often late at night or first thing in the morning
  • Shortness of breath
  • Fatigue
  • Pale skin
  • Difficulty swallowing
  • Pain in the abdomen, back or chest
  • Increased heart rate
  • Excessive bruising
  • Headache
  • Heavy menstrual bleeding

If you have dark urine or other PNH symptoms, reach out to your doctor. Our hematologists can diagnose PNH and recommend the right treatment to protect your health.

PNH Diagnosis at Valley

Symptoms of PNH can be similar to symptoms of other blood disorders. But getting an accurate diagnosis will help you get the right treatment.

At the Center for Blood Disorders, we’ll take your medical history and examine you on your first visit. Your hematologist may also recommend tests, such as:

  • Blood tests, which can find irregularities in your blood cells and signs of anemia (low red blood cells)
  • Flow cytometry, a specialized blood test that looks for certain proteins on blood cells
  • Urine test, which checks for hemoglobin and other substances in your urine

PNH Treatment at Valley

Today, there are more options than ever to treat PNH and prevent problems like blood clots, kidney disease and leukemia. Treatment can also help manage anemia, which is common with PNH.

Your hematologist will suggest treatments based on the severity of your disease, overall health and personal goals.

PNH treatments at Valley include:

  • Monoclonal antibodies
  • Blood transfusions

Monoclonal Antibodies

Monoclonal antibodies have been developed to treat PNH. These medicines target specific proteins in your blood and prevent your immune system from attacking red blood cells.

We may also suggest steroids to calm your overactive immune system, as well as blood thinners to prevent blood clots.

Blood Transfusions

If you have anemia from your PNH, we may recommend a blood transfusion through our ambulatory infusion center. This can help replace red blood cells damaged by PNH.

Why Choose Valley for PNH Care?

  • An opinion you can trust: PNH can be misdiagnosed, but the team at the Center for Blood Disorders has the experience needed to make an accurate diagnosis. Our expert team includes hematologists, nurses, pathologists, and other specialists who work together to accurately diagnose your PNH. If you haven’t found answers elsewhere, we’re here to help.
  • Support from a dedicated nurse: We understand that making appointments is time-consuming. Your nurse navigator at Valley will coordinate all your appointments with your care team.
  • Stem cell transplants at Mount Sinai: Valley’s alliance with the Mount Sinai Health System offers you access to more treatments for PNH. These treatments include stem cell transplants, which are not widely available at other hospitals.
  • Access to clinical trial expertise: The Center for Blood Disorders offers the most promising PNH treatments, which means you don’t have to travel far for your care. That’s why our team participates in clinical trials on innovative treatments for PNH and other benign blood disorders.