Coping With Paroxysmal Nocturnal Hemoglobinuria

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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.

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

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Emotional

The emotional toll of 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, your treatment options, and how to prevent complications.

Even with medications to control the disease or curative therapies like bone 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 stress is 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.

Physical

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

Your doctor might suggest different treatments for your symptoms. For example, if you are anemic, you might need to take iron supplements or have blood transfusions. Taking care of your mental health, such as by limiting stress, will also have a beneficial effect on your physical symptoms.

Social

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.

You can start by asking your healthcare team if they know of any support groups near where you live. If there are none, you might turn to online and social media communities, where you can connect with other people who have PNH, such as:

Practical

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:

  • Talk to your doctor before traveling (especially if you're traveling by air).
  • Get up and walk or move frequently while traveling to prevent blood clots.
  • Discuss the risks of taking hormonal birth control with your healthcare provider.
  • Talk to your doctor about your increased risks of bleeding or blot clots after surgery.
  • Consider the increased risks of complications if you are, or plan to become, pregnant.
  • Eat a well-balanced diet that is rich in iron and folic acid.
  • Engage in stress-reduction techniques like yoga or meditation.

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 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. 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

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

  3. Johns Hopkins Medicine. Paroxysmal nocturnal hemoglobinuria (PNH).

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