Taking care of mental health when living with PNH

Paroxysmal nocturnal hemoglobinuria (PNH) is a rare disorder that causes the breakdown of blood cells. When a person has PNH, the bone marrow produces blood cells that are vulnerable to attacks by a part of the immune system called the complement system.

People with PNH will often have low counts of multiple types of blood cells, which can cause anemia, increase the risk of infections, and cause problems with bleeding. Even mild disease activity can cause significant fatigue and impact a person’s quality of life. Blood clots are a common (and dangerous) complication, occurring in as many as 40 percent of people with PNH at some point. At its most severe, PNH can cause bone marrow failure, chronic kidney disease, and other life-threatening complications.

The only potential cure for PNH is a hematopoietic stem cell transplant. Also called a bone marrow transplant, this is a physically demanding treatment with a high risk of complications, and it’s only recommended in some circumstances.

For most people with PNH, treatment will focus on management and control. Treatment options have improved in recent decades. Complement inhibitors are the main treatment. These are medications that suppress the activity of the complement system and prevent the destruction of blood cells. Blood transfusions are also needed in many cases.

Even people who are cured with a hemopoietic stem cell transplant will require lifelong monitoring and follow-up care due to the risk of side effects that can occur after such a procedure.

PNH often affects mental health

Chronic health conditions like PNH are emotionally and mentally demanding to live with. There are the demands of keeping up with treatment, higher healthcare costs, and the uncertainty about what will happen in the future—will there be complications, will you need to go to the hospital for treatment? PNH can also cause physical discomfort, including pain and rapid heartbeat, which can affect how you feel and interrupt sleep.

PNH also has physical effects on the brain. Like any organ in the body, the brain requires a steady supply of oxygen to function normally and stay healthy. Lower-than-normal amounts of red blood cells can affect thinking, moods, and motivation.

Making mental health a priority in treatment

Studies have found that PNH affects emotional functioning, in some cases contributing to symptoms of anxiety and depression. People with PNH often experience a lower quality of life. In addition to improving blood cell counts and preventing complications, mental health and quality of life are also important goals of treatment—and important topics to discuss with your healthcare providers.

Here are some ideas to help guide you through this aspect of living with PNH:

• Pay attention to your moods and stress levels. Try to identify anything that is causing you stress or affecting your moods. Also try to identify anything that is difficult, such as getting a good night’s sleep or concentrating.
• Keep a journal where you write down notes on how you feel each day, including energy levels, moods, thoughts, and what you did that day.
• Talk to your healthcare providers about the foods you eat, your exercise habits and activity level, and what you consider to be your healthy and unhealthy habits. If you need to make changes, your healthcare provider can help guide you through them—for example, exercise may require modifications to accommodate symptoms like anemia or bleeding.
• Consider participating in a support group that meets online or in person.
• Also consider if working with a mental health professional or family counselor might benefit you and your loved ones.
• Try activities that have been shown to reduce stress, such as meditation, breathing exercises, and other mindfulness practices
• Schedule time for the things that you enjoy, such as hobbies, creative pursuits, and spending time with friends and loved ones.

Remember, PNH is a different experience for everyone. Work with your healthcare team, be honest about what you need from treatment, and find the approach that works for you.