Your personalized results

Thank you for taking the PNH symptom questionnaire. This tool can help facilitate discussions with your doctor about your symptoms, which may be caused by ongoing hemolysis. It includes a word cloud featuring the symptoms you mentioned (the larger the word, the more prominently you rated the symptom) and a list of your answers. You can share this page with your doctor to explain how you're feeling.

Sharing your experiences with your doctor

On the day of your appointment

Here are a few suggestions to help you start a conversation with your doctor. Every person’s experience is unique. These are just examples to help guide your discussions, and you should speak to your doctor however you are most comfortable.

Starting the conversation

Questions you can ask

“I'm experiencing fatigue, have shortness of breath, and can't keep up with daily tasks like picking up the kids or doing laundry.”

“Are persistent, new, or worsening symptoms all signs of ongoing hemolysis?”

“I called out of work 5 days this month and I'm exhausted, even with 8 hours of sleep.”

“Why am I experiencing this level of fatigue?”

“My lab values look okay, but I'm still having symptoms.”

“Why have my lab test numbers stayed the same/improved if I'm not feeling better? What is the normal range for this lab value?”

“This past month my stress has been overwhelming. I'm also feeling frustrated by the impact of fatigue on my life.”

“Do you have any strategies I can use to help manage fatigue?”

“I'm on treatment, but I'm still getting blood transfusions.”

“Can you explain why I need transfusions?”

My additional questions