Meet Ghinwa, PCT Warrior
“Alongside porphyria, I also live with multiple chronic medical conditions, severe allergies, and intolerances.”
-Ghinwa, PCT patient.
My name is Ghinwa. I’m 26 years old, and I’m from Lebanon. I’m a Registered Nurse and someone who truly loves life, nature, and helping others. Alongside porphyria, I also live with multiple chronic medical conditions, severe allergies, and intolerances.
I enjoy hiking, spending time in coffee shops, reading, playing sports, and being outdoors. One of my biggest dreams is to become a content creator focused on chronic illness and rare disease awareness, so that more people living with invisible illnesses feel seen and understood.
“I experienced repeated attacks with severe skin manifestations, extreme photosensitivity, abdominal pain, and diffuse body pain that affected every part of my daily life.”
-Ghinwa, PCT patient.
My symptoms began more than two years before I was finally diagnosed.
I experienced repeated attacks with severe skin manifestations, extreme photosensitivity, abdominal pain, and diffuse body pain that affected every part of my daily life. It became increasingly difficult to understand what was happening to my body.
Finding answers was one of the hardest parts of my journey.
It took more than two years to receive a diagnosis. During that time, I went through multiple misdiagnoses and experienced medical gaslighting. Since porphyria testing wasn't available in Lebanon, my samples had to be sent all the way to Spain before I finally received an answer.
I was diagnosed with Porphyria Cutanea Tarda (PCT), although I continue to experience recurrent attacks and photosensitivity reactions similar to what many people living with Erythropoietic Protoporphyria (EPP) describe.
Ghinwa enjoying outdoors with UV-protective clothing.
Porphyria has changed many aspects of my life, both physically and emotionally.
Today, I depend on UV-protective clothing and strict sun protection to reduce reactions and prevent attacks. Simple things that many people take for granted require planning and constant precautions.
One of the hardest parts of living with porphyria has been feeling misunderstood.
Invisible illnesses can be incredibly isolating. Many people, including healthcare providers, underestimated my symptoms or assumed I was exaggerating because I looked "fine." Being misunderstood often hurt just as much as the physical symptoms themselves.
One of the most painful moments in my journey was realizing that my body could no longer tolerate bedside nursing the way it once did. As someone who loves helping others, accepting those limitations was heartbreaking.
“One thing I’ve learned throughout this journey is how important it is to feel heard and believed. That alone can make a huge difference for someone living with a rare disease.”
Despite everything, I've learned that strength doesn't always mean feeling strong.
Sometimes, strength is simply choosing to keep living, hoping, and moving forward despite chronic pain and uncertainty.
My faith, my family, and the supportive people around me continue to give me strength. I've also found purpose in raising awareness and advocating for people living with rare diseases.
To anyone who has recently been diagnosed, I want you to know this:
Your symptoms are real.
You are not alone.
Keep advocating for yourself, protecting your health, and never stop searching for the care you deserve.
Looking ahead, I hope for greater awareness, earlier diagnoses, and continued medical progress. My goal is to use my voice to help others living with chronic illnesses feel seen, understood, and less alone.
Ghinwa’s inspiring story with PCT.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
