Getting a PNH diagnosis can be a long and challenging journey, since it's a rare condition and its symptoms can overlap with other issues. Here's what the process generally looks like:
- Track your symptoms — Fatigue, chest pain, dark urine, and infections are common signs. Write them down so nothing gets missed at Show Full Answer
Getting a PNH diagnosis can be a long and challenging journey, since it's a rare condition and its symptoms can overlap with other issues. Here's what the process generally looks like:
- Track your symptoms — Fatigue, chest pain, dark urine, and infections are common signs. Write them down so nothing gets missed at appointments.
- Advocate for yourself — If a doctor isn't taking your symptoms seriously, it's okay to seek a second opinion. A good doctor will listen and respect what you're experiencing.
- Blood tests — Key tests include flow cytometry (the gold standard for PNH), a complete blood count, and tests for clotting issues like a d-dimer test.
- Bone marrow tests — Sometimes ordered to get a fuller picture of what's happening.
- Attend all follow-up appointments — Diagnosis can take time, so staying consistent with your care team is really important.
One myPNHteam member shared that after 10 years of being undiagnosed, the turning point came when they found a doctor who truly listened — and they also came prepared with their full lived experience to share. That combination made all the difference.
Being your own biggest advocate, and finding a doctor who genuinely listens, can be the missing puzzle piece in getting the answers you deserve. 💙
May 15
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