Welcome to PH Human

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.

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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.[1][2]

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 …

PH Human contains a wide range of information on PAH.

Click here to read about the common symptoms and causes, methods of diagnosis, and how PAH is treated.

Every person living with PAH will have a unique experience.

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. Click here for practical advice and tips.


… and find resources to support you


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 here to find out more.

Hollie, UK

“It’s about mentality not physicality. Don’t let PAH change the course that you want to take.”

Amina, Bosnia and Herzegovina

“To look beyond my PAH diagnosis and help othersachieve their goals.”

Liv, Switzerland

“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.”

Andjela, Serbia
“I have PAH, but PAH doesn’t have me.”
Pere, Spain

“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.”

Irena, Bulgaria

“My diagnosis was not a life sentence. I’ve found my own way to be happy taking care of myself and others.”

Jana, Czech Republic

“You should focus on what you can do, not what you can’t do.”

Melinda, Hungary

“It is scary at first, but you need to live your life your own way and never be afraid of what’s next.”

Nadiya, Ukraine

“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! 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.

Visit the Living Well with PAH page

References

Myeloma UK AL amyloidosis Essential Guide. Accessed May 30, 2022.
Lousada I, Comenzo RL, Landau H, et al. Light chain amyloidosis: patient experience survey from the Amyloidosis Research Consortium. Advances in Therapy. 2015;32(10):920-928.
Amyloidosis Support. Amyloidosis awareness. Accessed May 26, 2022.
McCausland KL, White MK, Guthrie SD, et al. Light chain (AL) amyloidosis: the journey to diagnosis. The Patient-Patient-Centered Outcomes Research. 2018;11(2):207-16.
Myeloma UK. Diet and nutrition. Living well with AL amyloidosis Infosheet. Accessed May 26, 2022.
Healthline. 8 Natural and Complementary Therapies for Amyloidosis. Accessed May 26, 2022.
Shin SC, Robinson Papp J. Amyloid neuropathies. Mount Sinai Journal of Medicine: A Journal of Translational and Personalized Medicine. 2012;79(6):733-48.
Cancer.Net. Amyloidosis: Symptoms and Signs. Accessed May 26, 2022.
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