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Living with a chronic illness is no joke, but, when the chronic illness is rare and genetic all together, it becomes a mission not just for the person living with it but the family and friends around them. Now when someone who has a rare, unheard genetic disease like Cystic Fibrosis all the while living in Pakistan, where medical advancements are lacking or when they’re there, it’s too expensive for the people.

Cystic Fibrosis is one of those genetic diseases that’s not easily diagnosed because of lack of medical equipment and testing facilities, but the treatment is so expensive and difficult that the person dealing with it gets drained physically; due to the impact it has on the whole body; mentally, emotionally, socially, and financially.

Most patients with CF are diagnosed at the newborn stage, or while they are toddlers; but some of them show symptoms later on in life and are diagnosed with it in their adulthood.

And that’s what happened to me.

The CF diagnosis dropped on me a decade ago, which broke me a little. Learning to fit my life around hours of treatments, the exhaustion that sank into my bones, the mental weight no one else could see, was a lot to carry. But I didn’t carry it alone. My family held me up with their love, their patience, and their stubborn belief in me. Hence, that’s what gave me immense will power and strength to fight against all the infections and complications that forced me to fall back down, but soon enough I’d stand back up ready to fight again.

CF patients try not to let this illness define their lives, but it’s hard when their entire lifestyle is molded around it. Infections, fevers, coughing attacks — you never know when one, or all of them, will show up unannounced. Getting a coughing attack at a public place used to mostly catch judgmental looks among a few concerned looks, and the main reason is the lack of awareness and a taboo that someone could have a genetic disease. Young kids, early teens and young adults have continued to suffer in silence, which has taken a psychological toll on them. But not anymore, because now the generation has started to make themselves aware of these kinds of issues.

You know how they say, it takes a village to raise a child? It’s actually quite similar if not the same in cases like these. The only difference is the village consists of doctors and families whose utmost priority is the health and wellbeing of a CF patient. Keeping that dedication and empathy alive in their hearts and souls, they formed a team consisting of doctors, patient advocates, and families in collaboration with Indus Hospital and Health Network (IHHN). The team introduced a campaign named, I HEAL CF program under which they provide a life changing medication called Trikafta, which is a genetic modulator. All thanks to Allah who listened to our prayers and sent doctors like Dr. Muhammad Fareeduddin and his team, who are the driving force of this initiative, they kept the dream alive in their hearts. Today, it’s been a year of providing Trikafta to 90 patients, when it all started with 45 patients, and a year later the number has doubled.

The best thing about this medication? It is being provided free of cost because it is so expensive that even the wealthiest families wouldn’t be able to afford it. Now not only the medication, but even the testing facilities are there to get timely diagnosis. 

Of course, getting access to this life-changing treatment wasn’t simple because – let’s be honest – even the things meant for us often come after a struggle and usually so we can learn to value them accordingly. Dreams alone aren’t enough; it takes persistence, collaboration, and unwavering commitment. As the poet Alexander Pope very aptly put it: hope springs eternal in the human breast. Hope for a life not defined by pain, chronic infections, and countless limitations. Hope for a brighter, longer, and most importantly, healthier life. Hope for a future chock-full of possibilities, where no one takes even a second of their lives for granted but instead takes in all the positive things nature and life have to offer.

CF is still part of us, but something altered. Trikafta has been a complete game changer. I swear it gave me breath I didn’t know I was missing. It slowed the storm inside my lungs. The years before it, especially through COVID, felt like drowning in slow motion. Traumatizing doesn’t even cover it. Looking back now feels like remembering a nightmare I finally woke up from. Before Trikafta, I had resigned myself to my fate. But God had other plans. He obviously didn’t want to leave me alone in agony. I went from being unable to fully catch a breath to experiencing what a full, comforting inhale feels like; from facing pulmonary exacerbations every time the seasons changed to having almost no mucus at all; from being absolutely gutted I wasn’t able to gain weight to having an almost normal appetite and slowly gaining weight; from being fatigued every single second of the day to feeling like I can almost function like every other person (with little breaks). I never knew – in fact, I never thought that this is what it feels like to function normally. This certainly is something new to get used to, but hey, am I complaining? Absolutely not! This is something I can happily adapt to without any complaints.