What It’s Like to Have CF in Pakistan

Living in Pakistan, I didn't know I had CF until I was 18 years old. After absorbing a big emotional blow, I started to fight back.

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Raheema Arbi
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My life took a sharp turn in 2016 and things have been quite different ever since then. That's when I learned that I had an uninvited guest -- cystic fibrosis. And this guest will never leave.

So, this monster was lurking inside me for 18 years. People talk about monsters under their beds; well, this monster was under my skin making me sick on and off, but never showing its true face.

2016 brought a new set of challenges for me to fight. Guess what? I did. Fun fact: it was the most dreadful time. Here's my story.

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At the end of March 2016, I got a fever ranging from 100 to 101 degrees -- pretty normal for me. I thought it was viral probably because of a change in the weather; so, I watched it for a day or two, while I made Panadol (Tylenol) my best friend. The next day, I woke up with a horrible backache on my left side, so bad that I could not breathe. I went to a doctor who mistook it for gastritis and gave me a syrup to calm it down. A family physician later diagnosed me with typhoid. But even after starting antibiotics, the fever wasn't calming down and instead worsened. That's when I went to my pulmonologist and he diagnosed me with pneumonia and advised a combination of antibiotics to fight off typhoid and pneumonia.

One month passed and, in all of this chaos, Cambridge International Exams (CIEs) were a week away. My fever had calmed down but decided to pay a visit again, this time breaking all my previous records and hitting 104 degrees. Hahaha. That night, I was scared to go to sleep. Why? Because I was scared that if I closed my eyes then something bad would happen.

My weight kept dropping (no surprise there) and my pulmonologist decided to admit me to a hospital Finally! The monster's about to be revealed. I had a lot of tests done, including for CF. Did I tell you that it was all during my CIEs? Thankfully I had a three-week gap between them. But, the test results came back positive for CF.

I was blank, clueless, and bummed out. I Googled CF since, obviously, where else would you go when you have no answers?

I was scared because it said that CF has no cure (yet) and living in Pakistan means that there's no proper treatment to help control its progression.

But I decided that instead of being bummed out, I needed to have strong willpower and fight CF as much as I could. Yes, it's difficult to have a smiling face when you're hurting inside (physically, not emotionally) but it's not impossible, right?

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There were times when I used to go days without doing my nebulizer because I had to adjust my routine to account for CF. It took me a while to get used to all of this and to finally accept that if I didn't follow this routine, my health would deteriorate. That's when the battle began -- and it's still going on.

It has been four years since my CF diagnosis and I have decided that I will not let myself suffer in silence, which is why I am aiming to spread awareness about CF in Pakistan. My hope is that the taboo of having a genetic disease will one day die down and people in this society will be more accepting toward those of us who suffer from any disease.

I still have days when I feel extremely demotivated and down about life, but then I remember that I cannot let CF dictate my life. It is me who has CF and not the other way around.

Hence, I am halfway through a degree that I have been dreaming of, because every time CF tries to pull me down, I fight and stand back up. That's what warriors do, right? I hope and pray that Pakistani CFers receive the life changing drugs for CF that people around U.S. and U.K. have been receiving.

I want to help make Pakistani society a better, loving, and accepting society for all of us living with diseases like CF and other disabilities. Kudos to all of you silent warriors and stay strong! We're in this together!

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Raheema is a CFer from Pakistan, currently earning a Bachelor's degree in social sciences with a focus in international relations from a university in Karachi, Pakistan. Raheema is looking forward to becoming a social activist, hoping to build a positive community for everyone. She also hopes that proper CF treatments come to Pakistan very soon. Arts and crafts and reading help Raheema keep her mind clear. You can follow her on Instagram.

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.