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Rare Disease Roadmap: Paroxysmal Nocturnal Hemoglobinuria (PNH)

Journey Overview

Navigate your journey with paroxysmal nocturnal hemoglobinuria (PNH) with a guide to the healthcare providers who treat rare blood disorders, questions to help you prepare for your appointments, and resources to help you better understand your diagnosis and your treatment options.

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A Patient’s Journey with Paroxysmal Nocturnal Hemoglobinuria (PNH)

Vanessa W.

Diagnosis (DX): Paroxysmal Nocturnal Hemoglobinuria (PNH)

First Symptoms:

Reddish or brownish urine (hemoglobinuria)
Fatigue, pale skin, shortness of breath, fast heart rate
Recurring episodes of symptoms

PNH can occur at any age
Affects all ethnic groups across the world
Increased risk of leukemia, infections, and blood clots

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Get to Know Your Care Team

Hematologist/ Oncologist
Treatment for PNH is typically overseen by a hematologist, a medical doctor with specialized training in diseases that affect the blood and bone marrow. Though PNH is not cancer, treatment may be overseen by a hematologist/oncologist, a doctor who specializes in treating cancers that begin in the blood and bone marrow.
Primary Care Provider
Your primary care provider is a practitioner who you see for basic healthcare needs and preventive care—things like checkups, vaccinations, and treatment when you are sick or injured. Your primary care provider may write referrals to specialists and coordinate care among the different members of your healthcare team.
Social Worker
Social workers are licensed professionals trained to help people manage the emotional and practical challenges of living with a health condition. This can include finding ways to reduce the cost of treatment, accessing patient education and resources, and coping with the mental and emotional burdens of the diagnosis.
Other Providers and Specialists
PNH can affect different people in different ways, and it can affect many different areas of the body. Depending on a person’s symptoms and treatment goals, they may work with a variety of other providers and specialists. Healthcare teams may include a geneticist, gastroenterologist, cardiologist, infectious disease specialist, and an OBGYN.

The Conversation: Questions to Ask Your Healthcare Team

Good communication with your healthcare team will help you get the most from your appointments with your healthcare provider. Follow these steps and questions to get started.

Prepare for your appointment

These steps can help you make the most of your time with your healthcare provider:

Keep a symptom journal. In addition to symptoms, you can use a journal to keep track of appetite, energy levels, moods, sleep habits, and how you feel each day.
Write down a list of questions and topics you want to cover at your next appointment
Prioritize the questions and topics that are most important to discuss with your healthcare providers.

Questions about treatment:

Ask these questions for every treatment you are prescribed.:

How does this treatment work?
How will we know if the treatment is working?
Why do you recommend this approach?
What are the goals of this treatment?
What are the risks associated with this treatment?
Should I make any lifestyle changes during treatment? Changes to activities, what I eat, or other habits?
What are the options if this treatment doesn’t work?
Who can I talk to if I’m concerned about the cost of treatment?

Questions about your healthcare team:

Coordinated care between your different healthcare providers is essential to managing PNH:

What is the most important information I need to know about my diagnosis?
Are there other healthcare providers I should be working with?
What can I do to ensure the different members of my healthcare team are up to date on my diagnosis and treatment?
Can I have copies of my lab reports and pathology reports?
Where can I learn more about PNH?
What new symptoms or changes in symptoms do I need to watch for? When do I need to call you? When do I need to seek emergency care?

Your appointment is an opportunity to learn more about your diagnosis. If you have a question, ask. If something isn’t clear, ask for an explanation.

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