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Disease & Treatment

In this section, you will find a wealth of information about PNH and its symptoms, diagnosis and treatment. Check the links below for all the answers to your questions about this disease.
pnh hpn rare blood disease maladie sang haemolysis

About PNH

Paroxysmal Nocturnal Haemoglobinuria (PNH) is a very rare and debilitating disease of the bone marrow that affects the blood and major organs. It is a chronic, life-threatening illness and can have devastating effects upon a patient physically, mentally and emotionally.

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Diagnosis

A PNH diagnosis is confirmed by a specialized blood test called flow cytometry. Usually, several other tests are performed during the diagnostic process to rule out complications of PNH and assess its severity. These may include a bone marrow biopsy, blood tests, x-rays, CT scans…

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Treatment

There are several treatment options available to people living with PNH, depending on the progress and severity of the disease. The only cure for PNH is a bone marrow transplant; other treatments are supportive only but have significant benefits including a reduction…

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Ask the Expert

Answers to common questions, prepared by the Canadian Association of PNH Patients and reviewed by a hematologist from Sunnybrook Health Sciences Centre.

What's New in Research

News about the latest in PNH research, including clinical trials currently underway.

New: Better Living with PNH

Choose Your Path and Live Your Life With PNH! A comprehensive guide with a holistic approach to better living with PNH. Find the most useful information and tools for you!

FIND A PNH SPECIALIST: View a list of board certified hematologists in your province

Click here

PLEASE NOTE: This information is intended for general knowledge only and is not to be substituted for medical advice and its accuracy is not guaranteed. Please consult with your medical practitioner for further information regarding your personal circumstances.

This information has been prepared by PNHSAA Inc., is copyright protected and is used with their permission.

Symptoms

Patients may experience few or many of these symptoms, as well as other less common symptoms. The progress of PNH cannot be predicted and when prescribing best possible treatment, your doctor should take into account your medical history, lifestyle and personal situation as well as the risks and benefits of each treatment.
  • haemolysis
  • anaemia
  • chronic severe fatigue
  • jaundice
  • nausea
  • abdominal pain
  • muscular pain
  • joint pain
  • dark/unusually coloured urine
  • lack of mental clarity
  • forgetfulness, difficulty concentrating
  • insomnia
  • tingling or numbness, particularly in the extremities
  • shortness of breath
  • headaches
  • dizziness
  • loss of appetite
  • esophageal (gullet) pain
  • erectile dysfunction
  • arrhythmia (irregular heartbeat)
  • difficulty dealing with daily tasks and situations
  • digestive problems
  • lack of motivation

About PNHCA

The Canadian Association of PNH Patients is a not-for-profit Canadian organization formed in 2009. The mission of the organization is to connect Canadians affected by Paroxysmal Nocturnal Haemoglobinuria and advocate for the best possible care for patients and ensure they are equipped with the most current tools and information to help them live well with the condition.

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