Managing your PH journey
Every Pulmonary Hypertension (PH) journey is different, from how a person is diagnosed, to how they manage their disease and live their lives. A PH diagnosis has the potential to make you feel lonely and isolated, particularly if you have a rarer sub-type like Pulmonary Arterial Hypertension (PAH). But it does not define you and you are not alone.
With the right approach and support, every PH journey can be managed. Learning more about your disease is an important first step to feeling confident and empowered throughout your care journey.
It all begins when you Breathe In and Speak Out.
Breathe In, Speak Out Toolkit and Support
Breathe In, Speak Out provides access to a range of PAH focused information, resources and support networks to help you manage your disease more effectively.
The Breathe In, Speak Out toolkit can be downloaded below and contains a range of resources to help you build knowledge, confidence and determination to be active in your care. The toolkit includes knowledge cards with facts about PAH, emotion cards to help you express your feelings and quotes from real PAH patients like you.
We also have local websites for different geographical regions that provide further information and access to a community of PAH patients, to give additional peer-to-peer support and resources. Click below to access your regional website:
PAH Patient Charter
The PAH Patient Charter outlines the standards of holistic care that we believe everyone with PAH should receive. It was developed by an international group of patients, patient advocacy group representatives and healthcare professionals.
We hope the information in the Charter will help you take control of your care journey and work with your care team to:
- Communicate effectively with each other
- Make decisions together
- Agree on a care plan that is appropriate for you