31 Days of CF: In Pakistan, Life With CF Is Hard

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by BNS Staff |

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Photo courtesy of Sumaiya Shahid

Day 15 of 31

This is Sumaiya Shahid’s story:

I am Sumaiya, an adult with cystic fibrosis (CF) from Pakistan, a country where most people are not even aware of this disease. Many medical professionals here who treat people with CF are not experts.

While I am a Pakistani, I was born in the United Arab Emirates. I consider myself fortunate to have been born there because I got an early diagnosis of CF and started my treatment straight away. But life took a turn, and I was off all treatments as a small child.

Long story short, I restarted my treatments from age 8 in Pakistan. At the time, I was suffering from symptoms due to severe pancreatic insufficiency. It was very difficult to find a doctor who understood cystic fibrosis. The one I was seeing gave up on me in 2015!

Luckily, I got in touch with another doctor in Karachi, who knew something about CF.

I never thought about “accepting” CF as part of my life. Instead, growing up with that treatment routine, I just considered it my life.

Being a CFer and living in Pakistan is very difficult and heartbreaking. Families don’t know about the condition, doctors are not CF trained, and treatment costs are not affordable. A family with average earnings has no alternatives. Most care is funded privately and government resources are scarce.

But having a strong faith in almighty Allah and determination to defeat the disease was my last hope. There was a time when I had to make a choice between my studies and treatments. The faith worked and Allah helped me complete my studies on a full scholarship.

We have been blessed recently with some online support from a trained doctor from overseas. We now have a group of families with CF who can seek advice and support each other. There are many CF-related videos in Urdu on the Pakistan Cystic Fibrosis Support Network channel that can be accessed for information and guidance.

The challenge is enforcing our determination to find solutions. With the help of Allah we will get there, In Sha Allah.

Cystic Fibrosis News Today’s 31 Days of CF campaign will publish one story per day for Cystic Fibrosis Awareness Month in May. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofCF, or read the full series.