Alliance for Pulmonary Hypertension
PEP Talks
Patients Empowering Patients
People living with pulmonary hypertension and members of the patient community share their experiences and practical ideas for everyday life.
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28 talks · 5 topics
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Emotional wellbeingMood, creativity and coping with setbacks 6 talks
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Rim · Algeria
You are more than your diagnosis, living with pulmonary hypertension (PVOD)
In this PEP Talk, Rim, a patient advocate from Algeria, shares her experience of living with pulmonary hypertension since childhood, specifically pulmonary veno-occlusive disease (PVOD). Diagnosed in childhood, she reflects on growing up with a rare disease and learning to adapt without losing her sense of who she is.
Rim talks about respecting her physical limits, avoiding comparisons with others and learning to ask for help without guilt. She also shares how writing her book, “The Killer Friend,” and becoming involved in patient advocacy gave her ways to express her experiences and connect with others.
Her message comes without any pressure to turn illness into an achievement: you do not have to write a book or become an advocate for your life to have value. Sometimes, getting through a difficult day is enough. Through her story, Rim encourages others to make room for their own interests and ambitions while allowing themselves to rest and accept support when they need it.
Emine Çayıroğlu · Turkey
Turning struggle into strength and never giving up
Emine Çayıroğlu shares her story of living with Eisenmenger syndrome and pulmonary hypertension, from childhood in a small Turkish village to returning to education and building a career. She reflects on how treatment and encouragement from her healthcare team helped her pursue the opportunities she had once thought were out of reach.
In this PEP Talk, Emine also speaks about losing her parents, undergoing two brain operations and learning to walk again. She describes the role of faith and support from those around her as she continues her recovery.
Through her “Patient Stories” programme, Emine has helped other people living with pulmonary hypertension share their experiences, understand their condition and feel less alone. Her story highlights the value of connecting with others and supporting patients to find their own way forward.
Suzanne Lea · UK
Ten easy things to lift your mood
Everyday ideas for finding moments of joy and connection when life feels difficult.
Colleen Brunetti · USA
How creativity became my lifeline
Colleen describes how writing and illustration helped her navigate life with PAH and explore new possibilities.
Jen Cueva · USA
Dealing with setbacks when you have PAH
Jen shares how she approaches difficult periods and draws on support while living with pulmonary hypertension.
Tania Cicognini · Italy
Cutting the clutter and making time for what matters
Tania reflects on how PH changed her priorities and helped her make space for meaningful relationships.
Patient groups & advocacyCommunication, awareness and organising activities 8 talks
New talk
Marika Gattus · Italy
How my friends, family and I got 230 women running for pulmonary hypertension
Diagnosed with pulmonary arterial hypertension (PAH) at just 24, Marika faced uncertainty about her future and the feeling that her life had been turned upside down. In this PEP Talk, she shares how raising awareness and supporting others helped her find a renewed sense of purpose while living with a rare disease.
Ioanna Alysandratou · Greece
How to set up and run a patient group with Viber
How digital patient groups can offer peer support and practical help between clinic visits.
Wendy Vansteenkiste · Belgium
How to write an engaging newsletter
Practical guidance on planning and writing newsletters that your patient community wants to read.
Richard Mindham · UK
Creating a compelling presentation
How to organise your ideas and build a presentation that connects with patients, professionals or policymakers.
Pisana Ferrari · Italy
A simple business plan for your patient organisation
A practical approach to creating a short business plan for a support group or patient organisation.
Mélanie Gallant Dewavrin · France
Organising a PH children and family weekend
Guidance on planning a weekend that brings together children, teenagers and families living with PH.
Micheal Garrett · USA
From zero to hero: speedskating for PH awareness
A caregiver’s experience of turning a personal connection to PAH into a campaign to raise awareness.
Ioanna Alysandratou · Greece
Using a mascot to raise awareness of PH
Meet Pongo, the purple elephant, and learn how a mascot can help a patient association raise awareness.
Everyday life & treatmentEnergy, oxygen, medication and pump therapy 6 talks
Jolie Lizana
Explaining PAH and understanding our “why’s”
Why can seemingly simple activities such as getting dressed, taking a shower, reaching overhead or climbing stairs be so exhausting when living with pulmonary hypertension (PH)? In this PEP Talk, Jolie Lizana draws on her experience as a person living with pulmonary arterial hypertension (PAH), her healthcare background and her work as a patient advocate to explain what is happening inside the body in clear, relatable language.
Louise Bouman · Netherlands
Managing your energy throughout the day
Louise shares her experience of pacing daily life, balancing activity with rest and recognising her limits.
Wim · Belgium
Living with PH and oxygen therapy
Wim talks about adapting to oxygen at home and planning for travel, holidays and everyday activities.
Değer Kesimoğlu · Turkey
Living with PAH medication side effects
Değer shares her experience of treatment side effects and the ways she has adapted to daily life with PAH.
Ayotunde Omitogun · Nigeria
Managing PH like a long-term project
Ayotunde explains how a project-planning approach can help organise appointments, medications and daily routines.
Louise Bouman · Netherlands
Living with PAH and pump therapy
An account of everyday life with a prostacyclin pump, from work and showering to travel.
Life after transplantDaily life, new directions and organ donation 4 talks
Aygün · Turkey
A New Breath: Aygün’s Lung Transplant and Organ Donation Story
Five years after her lung transplant, Aygün shares her deeply personal story of living with a genetic lung disease, waiting for a donor and waking up after surgery able to breathe freely.
In this PEP Talk, she reflects on the emotional weight of waiting for a transplant, losing her mother just days before the call came, and her profound gratitude to her donor and their family. She also describes how her diagnosis inspired her to learn about organ donation and become a donor herself.
Her message is a heartfelt appeal to consider organ donation and the difference it can make to someone waiting for a transplant: “Let’s keep each other alive.”
Suzanne Lea · UK
Career pivot after transplant: finding a new passion
Suzanne shares how adapting to life after transplant led her from hospitality to a new career working with dogs.
Pisana Ferrari · Italy
Living and thriving after a double lung transplant
Pisana shares lessons from more than two decades of life after transplant, including daily routines and emotional adjustment.
Alena Adarbehova · Vienna / Abu Dhabi
Living with photopheresis after a double lung transplant
Alena shares her experience of chronic lung allograft dysfunction and receiving photopheresis after transplant.
Diagnosis & finding supportAdjusting to a diagnosis and connecting with others 4 talks
Değer Kesimoğlu · Turkey
Just diagnosed with PAH: what to expect
Değer reflects on receiving her diagnosis and finding support through a patient association.
Derek Henderson · Canada
What I’d tell my newly diagnosed CTEPH self
Derek looks back on his diagnosis, surgery and recovery, sharing what he wishes he had known at the start.
Rishabh Radhakrishnan · Singapore
Being a young student diagnosed with CTEPH
Rishabh shares his experience of diagnosis and treatment, and returning to student life with support.
Dina Grajales · Colombia
The butterfly effect: from PAH diagnosis to a support movement
Dina reflects on how her diagnosis led to patient education, community support and advocacy in Colombia.
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Thank you to every speaker who has shared their experience with the PH community.