Living well

Rediscovering the joy of "yes"

Living with PNH might mean you have to say no more than you’d like – to friends, to opportunities at work, to hobbies you once loved. But what if you could say yes more often?

If ongoing symptoms are standing in your way, speak openly with your doctor about how they are impacting you
and what you want to change. Consider: what would you need to have a little more “yes” in your day?

Living your best life

Scientists point to six related elements that contribute to optimal health: emotional, occupational, physical, social, intellectual, and spiritual. The symptoms of PNH may impact all of these, but developing a plan that considers what’s most important to you can be the first step to more “yes.”

Emotional health, or the ability to recognize feelings, cope with stress and approach life optimistically

The ups and downs of PNH and the impact of symptoms on a person’s sense of self can challenge emotional health.

Ask yourself: How do the symptoms of PNH impact my emotions? How might I want to feel differently? What needs to change for me to feel more excited about my life and my future?
Your ability to contribute your unique gifts, skills, and talents to work that is both personally meaningful and rewarding

PNH symptoms can make it more difficult to achieve your ambitions, impacting your occupational wellness.

Ask yourself: How are PNH symptoms impacting my work? Have I been able to pursue work of greatest personal interest and feel successful at it? What would need to change for me to gain more satisfaction from my work?
Physical wellbeing, or how your body feels

You can help enhance this area through healthy nutrition, exercise, regular medical care and listening for your body’s “warning signs” when something isn’t right.

However, the symptoms of PNH – like fatigue, headaches and trouble breathing – can challenge physical well-being.

Ask yourself: How am I feeling? What symptoms do I notice? What would I want to change to improve how I feel?
Your social life, or your role in your community, including family, friendships and your ability to connect with other people with PNH

The unpredictability of PNH symptoms can make it more difficult to build and maintain relationships and can challenge your social well-being.

Ask yourself: How do my PNH symptoms impact my personal relationships? What would need to change to enable me to pursue those relationships more freely?
Pursuing interests, or the ability to learn new things, feed your curiosity, acquire new skills and explore the unknown

PNH symptoms can make it hard to commit the time and energy needed to enhance your intellectual wellbeing.

Ask yourself: How are my PNH symptoms holding me back from pursuing my personal interests? In what ways do I want to grow? What would need to change to make this a reality?
Finding a sense of purpose, or feeling your life has clear direction and meaning

Many people with PNH find that the daily symptoms can change how they see themselves and their role in the world. This can impact spiritual wellness.

Ask yourself: What gives my life meaning and purpose? How have my PNH symptoms gotten in the way of this? What would need to change for me to find greater meaning in my life?

Exploring wellness in your life

Taking the first steps towards greater wellness often involves considering what’s most important to you: what areas would you most like to change? The resources below can help you get started.

Tips from an expert

Professional health and wellness coach Leslie Thorpe shares how different aspects of wellness can be impacted by PNH, and reviews strategies to help you get more out of life.

Say “yes” to life

Leslie Thorpe
The six dimensions of wellness

Leslie Thorpe

Leslie Thorpe was compensated by Apellis Pharmaceuticals, Inc. for the time required to develop these resources.

Partnering with your care team

Explore how your PNH symptoms may be impacting your day-to-day with this short quiz. The results can be used as a starting point to discuss options with your doctor.

Take the quiz

Talking openly and honestly with your doctor can be the first step towards greater wellness. Prepare for the conversation with these helpful tips.

Get ready

Community stories

A little
more “yes”

See how Alyce relentlessly advocated to improve her symptoms so she could earn her captain’s license.

Alyce

A
You + your doctor =
more of the life you want

Hear how Erin advocated with her doctor to help her better pursue her goals.

Erin

E

Alyce and Erin were also compensated by Apellis Pharmaceuticals, Inc. for the time required to share their stories. Every person’s experience with PNH is unique. These resources do not include individual treatment or medical advice. You should speak with your doctor about questions you may have on PNH, its symptoms, and treatment.

Living well

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Caregivers

Understanding PNH

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Living well

Rediscovering the joy of "yes"

Living with PNH might mean you have to say no more than you’d like – to friends, to opportunities at work, to hobbies you once loved. But what if you could say yes more often?

Living your best life

Emotional health, or the ability to recognize feelings, 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 wellbeing, 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

Exploring wellness in your life

Tips from an expert

Partnering with your care team

Community stories

Alyce

Erin