Table of ContentsView AllTable of ContentsEmotionalPhysicalSocialPracticalNext in Paroxysmal Nocturnal Hemoglobinuria GuideSymptoms and Causes of Paroxysmal Nocturnal Hemoglobinuria (PNH)

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Table of Contents

Emotional

Physical

Social

Practical

Next in Paroxysmal Nocturnal Hemoglobinuria Guide

Paroxysmal nocturnal hemoglobinuria(PNH) is a rare and often progressive disease that can affect your physical and mental health. Even though the condition is rare—only about 1 in 1 million people develop it—there is a lot of research and support for people living with PNH.

Read on to discover what you can do to manage and cope with PNH, as well as where to find support to improve your overall health and well-being.

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A white couple holding hands; the female presenting person is hooked up to a blood transfusion. They are smiling.

What Is Paroxysmal Nocturnal Hemoglobinuria?

Theemotional tollof having a chronic disease can be intense. If you have PNH, you may feel a host of emotions, including fear of fatal complications of the condition and, eventually, acceptance of the limitations that having the condition can place on your life.

Educating yourself about living with PNH is the first step after you are diagnosed. Your healthcare team can talk to you about what you can do to manage the condition, yourtreatment options, and how to prevent complications.

Even with medications to control the disease or curative therapies likebone marrow transplants, it can be difficult to manage your fears of recurrence or worsening of PNH. It can also be tough to cope with the physical and social limitations that the condition can create.

Managing your stressis an important aspect of living with a chronic disease. You might find it beneficial to work with a therapist or counselor, especially when you are still trying to learn about the diagnosis and how it will change your life.

Although PNH is a condition that develops at the cellular level, it has effects on your physical health. You may experiencesymptomssuch as:

The physical and emotional demands of chronic disease—especially one that can cause severe fatigue and weakness—can take a toll on your social relationships. Whether you miss work because of your illness or have to pass on social events, living with a chronic illness can, at times, be lonely and isolating.

If you have a rare disease, it can be even more difficult to find support or other people who understand what you are going through.

Pacing Yourself Can Help With Chronic Pain and Fatigue

You cannot prevent PNH from developing, but you can take steps to avoid flare-ups or complications. Here are a few practical measures to keep in mind:

It’s also important that you have a strong support system that you can rely on—be it in the form of a compassionate person to talk to or to help around the house when you need it.

You should also work closely with your healthcare team to make a plan for what you will do if you experience a flare-up or complications from PNH and its treatments.

Summary

Chronic disease management can be challenging no matter what your condition is. With rare diseases, it can be even more difficult to find people and organizations that can provide support.

If you have PNH, talk to your healthcare provider about your specific needs, whether it’s having help at home or finding a supportive community to join.

A Word From Verywell

Living with a chronic condition, especially one as rare as PNH, can affect every aspect of your life and influence your physical, emotional, and social health.

If you are having a difficult time coping with PNH, it’s important to talk to your healthcare team and figure out how you can manage your condition and take care of your well-being.

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4 SourcesVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Cançado RD, da Silva A, Araújo, Freire Sandes A, et al.Consensus statement for diagnosis and treatment of paroxysmal nocturnal haemoglobinuria.Hematol. Transfus. Cell Ther.September 2021;43(3):341-348. doi:10.1016/j.htct.2020.06.006Canadian Association of PNH Patients.The Guide to Living Well with PNH. Updated 2018.Johns Hopkins Medicine.Paroxysmal nocturnal hemoglobinuria (PNH).National Organization for Rare Disorders.Paroxysmal nocturnal hemoglobinuria. Updated 2019.

4 Sources

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.Cançado RD, da Silva A, Araújo, Freire Sandes A, et al.Consensus statement for diagnosis and treatment of paroxysmal nocturnal haemoglobinuria.Hematol. Transfus. Cell Ther.September 2021;43(3):341-348. doi:10.1016/j.htct.2020.06.006Canadian Association of PNH Patients.The Guide to Living Well with PNH. Updated 2018.Johns Hopkins Medicine.Paroxysmal nocturnal hemoglobinuria (PNH).National Organization for Rare Disorders.Paroxysmal nocturnal hemoglobinuria. Updated 2019.

Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.

Cançado RD, da Silva A, Araújo, Freire Sandes A, et al.Consensus statement for diagnosis and treatment of paroxysmal nocturnal haemoglobinuria.Hematol. Transfus. Cell Ther.September 2021;43(3):341-348. doi:10.1016/j.htct.2020.06.006Canadian Association of PNH Patients.The Guide to Living Well with PNH. Updated 2018.Johns Hopkins Medicine.Paroxysmal nocturnal hemoglobinuria (PNH).National Organization for Rare Disorders.Paroxysmal nocturnal hemoglobinuria. Updated 2019.

Cançado RD, da Silva A, Araújo, Freire Sandes A, et al.Consensus statement for diagnosis and treatment of paroxysmal nocturnal haemoglobinuria.Hematol. Transfus. Cell Ther.September 2021;43(3):341-348. doi:10.1016/j.htct.2020.06.006

Canadian Association of PNH Patients.The Guide to Living Well with PNH. Updated 2018.

Johns Hopkins Medicine.Paroxysmal nocturnal hemoglobinuria (PNH).

National Organization for Rare Disorders.Paroxysmal nocturnal hemoglobinuria. Updated 2019.

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