Living with PH

Pulmonary Hypertension (PH) is a disease that can put a tremendous strain on your life, whether a loved one has been diagnosed or you have been diagnosed yourself. For a lot of patients it has taken quite a long time to finally get a correct diagnosis, which is the first step to receiving targeted therapies to relieve their symptoms and to improve their quality of life.

PHA Europe and also the patient association in your country are aiming to help you to cope with your condition. It can help to learn that there are others who are facing the same challenges as you.

  • Look up our “Affiliates” section to see if there is a PH patient association in your country and get in touch with them to see what support and resources may be available for you.
  • In the different sections of this website you will find useful information about PH and its various forms, including classification, diagnosis, treatments, surgical options and new clinical trials, as well as information about the activities of PHA Europe.
  • Living with PH requires to adapt but it does not require to give up hopes, plans for the future and actual living life at every level. Look what young adults think and do in this publication made by Actelion: “Young Adults Living with PAH Report
  • Look up “Our PH Library”, a joint project PHA Europe and the PHA US, which contains over 200 high quality resources developed by patient groups around the world, in 24 languages, with a very simple search function for information on specific topics.
    Our PH Library logo
  • Further resources are available in our “Collaborative educational projects” sections: “Time to Talk“, “PH. It’s personal” and “Opening Lines“.
    Time to Talk  PH. It's personal.  PAH opening lines
  • Join the PHA Europe Facebook Facebook Pulmonary Hypertension Association Europe and Twitter groups Twitter @EuropePHA in order to get to know more about what we’re doing and also to get in touch with other people suffering from PH.
  • On our YouTube Youtube channel you can see a growing number of stories from other patients, that demonstrate how to cope with the new situation and where to find support, including Rosie’s “My Breathtaking story“, “Paige for PH awareness” and Gabriele’s story, a CTEPH testimony.
  • PH Time Matters is another online resource where other patients, like you, are talking about their hopes and dreams for the future.
    Time Matters
Last updated: September 28, 2018