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Welcome to PH Human
Welcome to PH Human, part of the JanssenWithMe digital
platform, created in partnership with the pulmonary
hypertension (PH) patient community and dedicated to
supporting people with the condition.
PH Human has a particular focus on pulmonary arterial hypertension (PAH), a rare type of PH that affects the blood vessels that carry blood from the heart to the lungs.
PH Human helps share real-life experiences from people living with PAH and a host of resources to support your PAH journey. We believe all people living with PH deserve access to the best possible care and, through our PH Human programme, we aim to provide you with useful information, tools, and advice to empower you to engage in your PAH management. If you have a family member, friend or loved one with PAH, these resources will also help you to better understand their diagnosis and enable you to support them throughout their journey.
Explore PH Human …
Clickhereto read about the common symptoms and causes, methods of diagnosis, and how PAH is treated.
You can learn about the real-life experiences of people living with PAH in ‘Living well with PAH’, as well as reading advice on relationships, lifestyle, and the challenges that PAH may present. Clickherefor practical advice and tips.
… and find resources to support you
.
Being able to communicate clearly about your PAH with your healthcare professionals, friends and family is vital. We want to empower you to be able to speak up about your feelings, discuss your diagnosis, and make informed decisions on managing your PAH. Breathe In, Speak Out recognises the importance of sharing experiences within the PAH community. We have developed aconversation kit, providing the tools to help you play an active role in managing your PAH.
Keeping track of your PAH can be challenging. ThePH Human appis a dedicated platform to monitor your PAH. You can monitor your well-being, vitals, and PAH symptoms on a daily basis. This allows your healthcare professionals to access detailed information on your condition and help you to receive the best possible care.
Everyone with PAH deserves the best possible care and treatment. OurPAH Patient Charter, created in collaboration with patients, advocacy groups and healthcare professionals, sets out what you should expect from your PAH care. It provides you with guidance on communicating with your healthcare professionals and caregivers to make informed decisions about your treatment and ensure you have access to holistic care and support.
Useful links and tools
There’s a lot of information and resources available beyond PH Human. In‘Useful links and tools'to learn more about PAH, you’ll find links to the European Pulmonary Hypertension Association website, alongside inspiring experiences of people living with PAH.
Inspiring stories from people living with PAH
We’ve collected inspiring stories from people living with PAH so that you can learn directly from their experiences – click
hereto find out more.
“It’s about mentality not physicality. Don’t let PAH change the course that you want to take.”
“To look beyond my PAH diagnosis and help othersachieve their goals.”
“If you really want to do something, try it, but do not fight the disease – embrace it as a part of your life and you can accomplish so much.”
have me.”
“I can’t do the same activities as before, but dealing with my PAH diagnosis has helped me to find a new rhythm in life and enjoy life more intensely in every moment.”
“My diagnosis was not a life sentence. I’ve found my own way to be happy taking care of myself and others.”
مرحبًا بك في مجتمع الرعاية الصحية الخاص بك
في J&J، نؤمن بالمشاركة مع المرضى ومقدمي الرعاية. وبرؤية ال مرضى على أنهم شركاء لنا، يمكننا فهم كيفية تلبية احتياجاتهم بشكل أفضل وتحسين رحلة الرعاية الصحية للمريض.
“It is scary at first, but you need to live your life your own way and never be afraid of what’s next.”
“The most important thing is to do what brings you and others joy, so do your favourite things and you will find inner happiness.”
Thank you for visiting PH Human
Thank you for visiting PH Human! We hope you find the site and its resources useful and supportive.
Whatever stage of your PH journey you are at, you deserve the best possible care and support.
