My Nephew Has CF in Iraq. Here’s What People Don’t See.
During CF Awareness Month, Emily’s Entourage invites members of the cystic fibrosis (CF) community to share their stories. Today’s blog post features Zahraa Ammar, a hospital pharmacist and aunt to a nephew with CF in Iraq, who shares the realities of supporting a child with cystic fibrosis in a setting where essential diagnostics, treatments, and specialized care are often out of reach.
The suffering of Iraqis with CF is a story of a thousand heartbreaks and disappointments; a story of children whose health is deteriorating bit by bit. These are children who are asking why what is free and available for everyone else is, for them, a journey of agony and challenges just to breathe.
What the world doesn’t see is that a CF diagnosis in Iraq is not a medical conclusion, but a secondary trauma after a labyrinth of clinical ignorance.
My story began with my nephew when he was just a few months old and we noticed his oily stools. For two years and eight months, we wandered in the dark, moving from one doctor to another through misdiagnoses: he was diagnosed with stomach infections, wheat allergy, milk allergy, and probiotic deficiency. With every diagnosis came a new set of medications. He was literally a guinea pig until finally, at two years and eight months one doctor requested a sweat test.
The test was not available in our province, so we had to travel to another just for him to have the test. When the results came back, he was diagnosed with CF with pancreatic insufficiency and fatty liver disease.
This diagnosis changed the course of his life—and ours—completely. As if that wasn’t enough, the biggest shock came when we realized the complete and total unavailability of treatments.
Imagine that enzymes, which are needed to help my nephew digest food due to his pancreatic insufficiency, were not available!
Without them, he lived in constant pain and could not digest the nutrients to grow and develop as children do. We had to wait for months to smuggle enzymes in from another country, and even then, we didn’t know if they had been stored correctly and would work.
As he grew older, my nephew was not growing alone; his CF was growing with him. As he experienced recurrent bouts of discomfort caused by CF, my sister and I felt helpless because we couldn’t get him access to the appropriate medications. Imagine a mother watching her child as he looks at her with his innocent eyes as if he is pleading for help, and she can’t do anything but wait for the pain to end. It’s as excruciating as you can imagine. It makes you feel guilty because you are in good health.
When we sent the genetic tests to determine the specific mutations causing my nephew’s CF, there was no laboratory in all of Iraq that could perform this service. We were forced to send the sample to India, with exorbitant financial costs, as we have no health insurance system in Iraq. After the results were finally available, we learned that he carries two rare mutations that are genetically ineligible for the current CFTR modulators.
At the age of five, his respiratory problems began: Bronchiectasis, or damaged airways, developed in the upper lobes of his lungs. He struggled to get sufficient air and required respiratory treatments three times a day just to breathe. The simplest treatments, which could potentially have spared him from this progression, were not available here.
Literally, a child fighting a battle he did not choose; it chose him.
As he began kindergarten, the “tiny soldier,” as we called him, was carrying his medication box instead of a crayons box. He had to bear the responsibility of reminding himself to take his medication before eating instead of thinking about playing. His childhood was being stolen by a disease that was suffocating him, robbing him of his very ability to breathe.
Now, we are facing a new chapter as he reaches school age: accept the isolation and remote learning that will destroy his mental health, or allow him to attend the overcrowded Iraqi schools where the risk of infection is a constant threat to his life.
While other children gather to play, he must only watch from the window of his house.
I am not talking about the suffering of my nephew only, but about the suffering of many Iraqi families who carry the same burden of this disease. There are many who have lost their children due to the deteriorating medical landscape in Iraq. There are children with mutations that can be treated by current modulators but it is a distant dream for families to acquire them.
Imagine watching your child deteriorate and die right before your eyes because the therapies that could save them simply do not exist in your geographic location.
Can you imagine the agony?
The parents and children here are not only fighting the health system in Iraq for those with CF; they are fighting the corruption of the health system for everyone with serious medical conditions dependent on specialized treatments and devices to keep them alive. For those with CF, that includes pancreatic enzymes, Pulmozyme, Hypertonic Saline, CFTR modulators, and airway clearance vests. Even the nebulized antibiotics, which are necessary to deliver medications to combat life-threatening lung infections, come at exorbitant prices that far exceed an individual or family’s ability to pay!
We have pleaded with the government to provide a specialized center, competent and experienced doctors, and the provision of standard of care treatments, but our requests have been struck down, time and time again.
My nephew is a hero—but he shouldn’t have to be.
Behind the silence and inactivity of our government, there are real lives suffering and dying. We are here, we are suffocating, and we refuse to be forgotten.
About the Author:
Zahraa Ammar is a hospital pharmacist based in Nasiriyah, Iraq, who uses her medical expertise and voice to champion the CF community. Her advocacy is deeply personal, inspired by the profound resilience of the true heroes in her life: her young nephew, Muhammad, and her sister, Muhammad’s mother.
Driven by a mission to turn agony into hope, Zahraa aspires to amplify the voices and untold struggles of CF families in Iraq to the global stage. She is dedicated to fighting for structural change, bridging healthcare gaps, and rewriting the reality for every individual battling this disease in her country, firmly believing that no child’s right to breathe should be limited by their geography.
