8 tips for navigating the challenges of PNH

Last updated May 20, 2025, by Mary Chapman
Fact-checked by Joana Carvalho, PhD

Living with a rare condition like paroxysmal nocturnal hemoglobinuria (PNH) can sometimes be overwhelming, especially when its symptoms seem to come out of nowhere. From fatigue and shortness of breath to abdominal pain and blood in your urine, the challenges of living with PNH can really add up.

Learning how to navigate these challenges through proper PNH management can help you feel more in control, even on harder days. Here are eight tips to help you manage daily living with PNH in a way that works for you.

1. Conserve your energy

Fatigue is one of the more common symptoms of PNH. It’s often caused by anemia, which happens when red blood cells break down faster than your body can replace them.

PNH fatigue can make even everyday tasks feel more difficult, which is why energy conservation strategies are so important for people with the condition. Learning how to pace yourself and listen to your body can make a big difference.

Some practical approaches for managing fatigue in PNH include:

• breaking big tasks into smaller, more manageable steps
• taking rest breaks throughout the day
• prioritizing tasks and saving energy for essential activities
• allowing for schedule flexibility and adjusting plans based on how you feel
• sticking to a regular sleep routine
• setting up your home in a way that limits extra movement or effort
• asking for help and delegating tasks when you can.

These small adjustments can help you feel more in control of your energy levels and manage the ups and downs of living with chronic illness fatigue.

2. Stick to your treatment plan

There are PNH treatment options that focus on reducing the destruction of blood cells that PNH causes, as well as supportive therapies for the management of specific symptoms of PNH.

Treatment adherence is crucial for maintaining stable blood counts, preventing complications, and improving your quality of life. Tips for adhering to your treatment plan include:

• Use a medication log or a reminder app to keep track of your medications.
• Schedule regular check-ins with your hematologist.
• Keep a journal for monitoring PNH symptoms so you can spot any changes.
• Involve your loved ones in your treatment plan for reminders and emotional support.
• Let your healthcare team know if you’re experiencing medication side effects or issues with medication access.
• Be open to adjusting your treatment plan if your needs or circumstances change.

3. Adjust your diet

While there are no specific nutrition guidelines for PNH, a balanced and mindful approach to nutrition can help support overall health.

For example, for some people with PNH who are at a higher risk for iron deficiency, a dietary adjustment may include incorporating iron-rich foods like lean meats, leafy greens, and fortified cereals. However, for others who may have iron overload from certain PNH treatments, this may be contraindicated.

Ultimately, it is best to work with your doctor and a dietitian to come up with a diet plan that benefits your particular case. It is especially important to communicate with your healthcare team before taking any dietary supplements.

4. Reduce infection risks

PNH can lower white blood cell counts, which makes it harder for your body to fight infections. Certain PNH therapies may also heighten your risk of developing infections.

You can potentially provide your body with immune system support by:

• avoiding exposure during high-risk seasons, such as flu season
• staying up to date with recommended vaccinations
• encouraging close contacts to be vaccinated
• washing your hands before eating, after being in public places, and after using the restroom
• maintaining clean kitchen surfaces
• consulting your doctor before traveling by plane
• getting enough sleep
• eating a balanced nutritious diet
• building a support network to help manage stress.

While preventing infections with PNH is not guaranteed, these measures may help boost your immune system.

5. Advocate for yourself at work and school

Whether you’re seeking workplace accommodations for your chronic illness or are trying to balance your schoolwork while managing your condition, by staying informed, seeking support, and communicating openly, you can advocate for your needs and thrive in school and work environments.

To do this:

• Explore accommodations such as flexible hours or remote options.
• Know your rights under disability protections such as the Americans with Disabilities Act.
• Communicate clearly with HR or school administrators when needed.
• Learn how to explain PNH, its treatment options, and how it impacts your daily life.
• Decide when and how much to disclose about your condition.
• Involve family members and friends in your advocacy efforts.
• Use PNH advocacy and support resources and tools to help you articulate your needs and rights.

6. Protect your mental health

For some people, stress is a big trigger for PNH (and other conditions). This is why stress management is so important for those with a chronic illness.

Speaking with a mental health professional with experience in chronic illness can help you mentally manage the emotional impact of living with a rare disease. They may recommend practicing stress-reduction techniques such as mindfulness, meditation, or journaling to manage emotional ups and downs.

They can also help you navigate difficult conversations with loved ones and can teach you how to set up appropriate boundaries in order to protect your health.

7. Plan for medical emergencies

PNH carries risks of sudden complications, such as infections and blood clots, so it’s important to plan ahead for any potential emergencies.

Some simple steps include:

• wearing a medical ID bracelet for rare diseases that showcases your PNH diagnosis
• having a written plan that includes details about your diagnosis, along with any current medications or supplements you take
• making sure close friends or family know what to do if you need help
• ensuring someone you trust has access to your health insurance information and legal documents
• always having an adequate supply of your medications
• having a packed hospital bag set aside with any necessities.

While you can’t fully plan for an emergency with a chronic illness, these steps can help you feel more prepared and at ease.

8. Connect with the PNH community

Joining support groups — whether in person or online — can be incredibly helpful for those living with PNH. Organizations like the Aplastic Anemia and MDS International Foundation, the PNH Global Alliance, and the National Organization for Rare Disorders can guide you to these PNH support resources.

In addition to support groups, you can also connect with others in the PNH community by attending conferences or webinars, allowing you to learn more about the disease while connecting with people who understand what you’re going through.

By taking these proactive steps to manage your health, stay informed, and build a support network, you can navigate the challenges of PNH more effectively and potentially improve your overall quality of life.

PNH News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.