Updated: Jul 14
Social media connects us across the globe, of course, and what we do with these connections is on us. In recent posts from the Live Fearlessly Foundation and CFVests4Life, I learned of a young man from Tunisia, diagnosed at a young age with Cystic Fibrosis. We subsequently connected through Instagram.
In learning more about differences in CF care between countries like the U.S. and Tunisia, I reached out to Adem Riahi to discuss matters further. Read our correspondence below. Please note, Adem doesn't speak fluent English and used a translator app for this interview~
I am Adem from Tunisia. I am 23 years old. I have Cystic Fibrosis. I was diagnosed with the disease at the age of six months due to the Delta f508 mutation, and a rare mutation.
Jason: What kind of care/treatment were medical providers in your country able to offer after your diagnosis?
Adem: In Tunisia, since I found out I have Cystic Fibrosis, I've only received some intravenous medication in the hospital for treatment. [Besides] enzymes, I have not received any other remedy that makes a better life possible. I hope to find someone who can help me and get a life-saving treatment, like Trikafta.
Jason: Would you tell us about your native country of Tunisia; what opportunities (work, leisure, etc) are available for young people?
Adem: Well, Tunisia is a wonderful country with beautiful weather and beautiful scenery. But those who rule this country have done nothing for young people, especially patients like me and other Cystic Fibrosis patients. We can't find a job where we can work. We don't even have a patient association to pay for us. They don't even know Cystic Fibrosis here. A huge lack of treatment, I can't even find a good clinic; and, I mean, a massive lack of medicines and enzymes😔😔😔
Adem: Working with Live Fearlessly Foundation and CFVests4Life has helped me in obtaining medicines such as enzymes and medical instruments that are missing in Tunisia and that I cannot obtain. And the Live Fearlessly Foundation helped me obtain a grant to buy a bicycle and a camera to capture the most beautiful moments. The bicycle helped me to move to beautiful places that I cannot [usually] reach.
Jason: How do you utilize social media to bring awareness to a relative lack of resources for Cystic Fibrosis patients in Tunisia?
Adem: I talk to patients all over the world through social networking sites to tell them about my case as a patient with Cystic Fibrosis in Tunisia. The topics we discuss are about new medicines and about the disease. My favorite sites are Facebook and Instagram. Thanks to them, I met friends with CF, and it helped me get to know you, and friends from the United States; and also, get to know cfvests4life and live fearlessly foundation.
Jason: Please tell us about your interests & hobbies. What kinds of activities help you fight CF and stay healthy?
Adem: I love taking beautiful photos, walking and cycling. I love photography because I love capturing beautiful moments and uploading them to people.
Jason is a filmmaker, brand ambassador, writer, illustrator, and is currently pursuing a degree in the field of I.T./Cloud Computing.