Wellness tool

Leaving doubt behind

The reality of life with PNH means you won’t own every moment, but you can own more of them. The first step is putting fear in the back seat and exploring your options. This tool can help you understand the impact PNH has on your overall wellness, how to prioritize what you want most, and then map out the next steps to put yourself back in the driver’s seat.

This tool is for your information only and does not contain medical advice. Please talk to your doctor about any questions you have regarding PNH, symptoms, or treatment.

Which PNH symptoms do you experience most often?

Select the symptoms below.

Please select at least one symptom.

Consider how often and how severe your symptoms are.

Move the sliding scales to reflect your experience.

Fatigue

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Headaches

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Shortness of breath

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Feeling of weakness

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Brain fog

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Loss of appetite

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Rapid heartbeat

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Abdominal/Chest pain

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Difficulty swallowing

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Erectile dysfunction

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

Back pain

Rarely
Sometimes
Often
All the time
Not too bad
Manageable
Pretty bad
Debilitating

How do you feel emotionally?

Select the feelings that best describe your experience.
Select all that apply.

Please select at least one emotion.

Take a moment to consider the impact these symptoms have on your qualiy of life.
Scientists point to 6 areas of overall wellness.

Which of these areas are most important to you?

Select as many areas as needed, but select at least one.

Please select at least one dimension.
Emotional health, or the awareness of feelings and the ability to cope with stress and approach life optimistically

Your ability to contribute your unique gifts, skills, and talents to work that is both personally meaningful and rewarding

Physical well-being, or how your body feels

Your social life, or your role in your community, including family, friendships and your ability to connect with other people with PNH

Pursuing interests, or the ability to learn new things, feed your curiosity, acquire new skills and explore the unknown

Finding a sense of purpose, or feeling your life has clear direction and meaning

Now consider your ability to thrive in each dimension while living with PNH.

Move the sliding scales to reflect your experience.

Emotional
Strongly Disagree
Disagree
Agree
Strongly Agree
Strongly Disagree
Disagree
Agree
Strongly Agree
Strongly Disagree
Disagree
Agree
Strongly Agree
Occupational
Strongly Disagree
Disagree
Agree
Strongly Agree
Strongly Disagree
Disagree
Agree
Strongly Agree
Strongly Disagree
Disagree
Agree
Strongly Agree
Physical
Strongly Disagree
Disagree
Agree
Strongly Agree
Strongly Disagree
Disagree
Agree
Strongly Agree
Strongly Disagree
Disagree
Agree
Strongly Agree
Social
Strongly Disagree
Disagree
Agree
Strongly Agree
Strongly Disagree
Disagree
Agree
Strongly Agree
Strongly Disagree
Disagree
Agree
Strongly Agree