The term PNH is based on early observations that people with the condition often passed dark urine at night or in the early morning. PNH stands for:
Paroxysmal = "sudden and irregular"
Nocturnal = "at night"
Hemoglobinuria = "hemoglobin (a protein in RBCs) in urine" (making urine appear dark)

However, our understanding of PNH has advanced since then and we now know PNH does not only occur at night. People can be impacted at different times of the day and not everyone will experience dark urine.

At first, early observations of PNH showed that people passed dark urine at night or in the early morning. Now we know this is no longer accurate. People can be impacted at different times of the day and not everyone will experience dark urine.

The urine appears dark when the immune system breaks down red blood cells by a process called hemolysis. But dark-coloured urine is only one of many PNH symptoms that may signal potentially serious illnesses. If left untreated, PNH may cause hemolytic anemia, chronic kidney disease or thrombosis (blood clots in your blood vessels).

PNH is a rare blood disease that is acquired, not inherited. This means PNH may appear over the course of a person's lifetime and is not passed down through genes. Read more about what causes PNH here.

Your family doctor may refer you to a hematologist (a doctor who specializes in treating blood disorders) who has the experience in managing PNH. These doctors are also known as PNH specialists. Consult your doctor about a referral based on your personal circumstances.

For more information, click here to see a list of Canadian, board-certified PNH specialists.*

* The list of Canadian PNH Doctors is accessible on a third-party website that is not managed or owned by Sobi, and is provided for general informational purposes only. Sobi makes no representation or warranty of any kind whatsoever, including, but not limited to, whether third-party websites or their contents may in any way be accurate, correct, complete or up to date, or that their data protection or data security standards are adequate. You are solely responsible for any and all interactions with any third-party website and the content they provide.

PNH is considered a chronic disease, which means it can last a long time. The only potential cure is a bone marrow transplant. However, well-matched donors are difficult to find and the procedure carries many risks. Transplants are considered in eligible people when management with medications no longer works.

Other strategies may be available to ease symptoms of PNH and prevent problems. Click here to learn more about the treatment options available.

If you're having a sub-optimal response to your current PNH treatment, your doctor may alter your treatment plan. They may change your current dose or consider other prescription medications that can be used to address your sub-optimal treatment response. This includes switching to another complement inhibitor or providing add-on therapy. Learn more about your treatment options here.

When you're having a sub-optimal treatment response, you may experience symptoms that either reappear or happen persistently during your treatment. The main tell-tale signs are fatigue, anemia or the need for blood transfusions. But there are also other symptoms you can experience. See the full list of signs and symptoms here.

It is important to have an open conversation with your doctor and to be okay with complaining about your disease. The goal is to get your PNH under control and to do this, you need to get to the heart of the issue. Talk to your doctor about how you really feel, what your treatment goals are and why your treatment should be re-evaluated. See this conversation guide here.

Talk to your doctor if you think you may be experiencing a sub-optimal response.