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Symptoms, and the severity of these symptoms, vary widely from patient to patient. Some of the more medically serious physiological symptoms associated with the condition include haemolysis, anaemia and arrhythmia (irregular heartbeat). Other physiological symptoms can include chronic severe fatigue, insomnia, nausea, jaundice and abdominal, esophageal, muscular or joint pain. Psychological symptoms are also seen in patients, and include a lack of mental clarity or motivation, forgetfulness or difficulty concentrating, and difficulty dealing with daily tasks and situations. Daily functioning can also be affected by shortness of breath, headaches, dizziness, loss of appetite, digestive problems or tingling or numbness in the extremities. Erectile dysfunction and dark or unusually coloured urine are also seen in patients. Haemoglobinuria quite literally stands for “haemoglobin in the urine” – a common symptom of PNH. Every case of PNH is different, and patients may experience few or many of these symptoms. If you have PNH and are concerned about symptoms you may be experiencing, see your doctor.

People living with PNH can look to several treatment options to help manage their symptoms. PNH has only one known cure – a bone marrow transplant – but other treatments can help patients live a more normal life. Patients can rely on a combination of supportive treatments, including blood transfusions to replace the red blood cells lost through haemolysis; natural therapies including acupuncture, massage or herbal medications; and prescription medications. Some patients benefit from corticosteroids (such as prednisolone or dexamethasone) to reduce the rate of haemolysis, anticoagulants or blood thinners, like warfarin that can decrease the potential for blood clots, folic acid or iron supplements to assist the body’s production of blood cells. One prescription medication approved by Health Canada in 2009 is known as the only treatment to effectively return a patient’s life expectancy to that of a normal person. Eculizumab, or eculizumab, is known to reduce symptoms and decrease the need for blood transfusions in PNH patients. If you have questions about a treatment or dosage, speak with your doctor.

To enjoy a better quality of life with PNH, some specialists advise living as healthy a lifestyle as possible, by eating a healthy diet and drinking lots of water. Listen to your body and rest when you need to. Pay attention to your symptoms, and if your condition changes or worsens, contact your physician. One of the best coping mechanisms for patients is talking about your disease. Try not to be afraid of talking about PNH with your family or friends. Once those close to you have a better understanding of the disease, they can provide emotional support, as well as help with your everyday tasks. Dealing with a chronic disease can be difficult – emotionally and physically – and talking about PNH with other patients can also be therapeutic. Though PNH is a rare disease that affects a relatively small number of people, take solace in the fact that you are not alone. By fostering a strong community of individuals living with PNH, be it through meetings, events or online discussion boards, you can share your experiences with patients living with PNH from across Canada and the world.

While there is no special diet that can alleviate your PNH symptoms, experts recommend eating a healthy, well-balanced diet containing lots of fruits and vegetables. Your doctor can help find the best eating plan for you. To ensure your body gets enough folic acid and iron, your specialist will likely recommend a man-made supplement. Folic acid and iron help your body make red blood cells. Always talk to your doctor to see which supplements are right for you, and before taking any supplements, medicines, vitamins or herbs.

The alkaline diet is based on the belief that certain foods can affect the acidity of bodily fluids, including the urine or blood, and can therefore be used to treat or prevent diseases. While there is no documented evidence that shows an alkaline diet (a mostly vegetarian diet consisting of fruits and vegetables) to improve PNH symptoms than a more acidic diet (including meats, dairy, processed foods), your doctor may recommend a diet similar to an alkaline diet to ensure your body’s health is optimal.

While it is possible for women with PNH to become pregnant, it can be dangerous for both the mother and infant. If you have PNH and wish to become pregnant, you should discuss this with your partner, your PNH specialist and an obstetrician who specializes in high-risk pregnancies. It is important to understand the risks before you become pregnant. If you do become pregnant, you should be very closely monitored by your doctors.