'Don't give up': Woman survives deadly cystic fibrosis that killed her three siblings

Complex, combined liver-lung transplant at Cleveland Abu Dhabi gives the 24-year-old a new lease of life

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After being told she would not survive the deadly cystic fibrosis that had killed her three siblings, Nada Mohamed refused to give up hope that she would beat the condition.

“We all know what the end-stage of [cystic fibrosis] looks like but we don't want to face it,” the 24-year-old said. “It was clear I only had months to live.”

The wheelchair-bound Egyptian decided to take the “last option” of a lung transplant.

“We were all so scared, but there was no turning back. I had no other option. It was either the transplant or nothing else.”

The surgery's cost of 10 million Egyptian pounds (around Dh778,000) was a challenge, but her family decided to try to raise the funds.

I should have died a year ago, but here I am
Nada Mohamed

Ms Mohamed, from Cairo, had first approached Cleveland Clinic Abu Dhabi to source a new genetic medication through them via crowdfunding.

“I had raised so much money for it with the help of so many people but when it didn't work I was disheartened,” she said.

Her condition started to deteriorate and her lung function dropped to a mere 28 per cent.

She arrived in the UAE last February, and initial checks indicated that a lung transplant was vital.

“Without the transplant, Nada's risk of dying within a year was very high,” said Dr Usman Ahmad, department chair of thoracic surgery in the Heart, Vascular and Thoracic Institute at Cleveland Clinic Abu Dhabi.

To compound the situation, she also needed a liver transplant.

14-hour operation

Being the only centre in the region to offer the complex, combined lung-liver transplant, Dr Ahmad was confident of her chances of survival.

On March 10, a team of experts took 14 hours to complete the complicated surgery, one of the first such procedures carried out in the country.

Ms Mohamed spent nearly a month in the ICU before being moved to a ward and is now out of hospital and back in Egypt.

After the surgery she took her “first breath” with her new lung, and was able to walk unassisted for the first time in months.

What is cystic fibrosis?
  • Cystic fibrosis is a genetic disorder that affects the lungs, pancreas and other organs.
  • It causes the production of thick, sticky mucus that can clog the airways and lead to severe respiratory and digestive problems.
  • Patients with the condition are prone to lung infections and often suffer from chronic coughing, wheezing and shortness of breath.
  • Life expectancy for sufferers of cystic fibrosis is now around 50 years.

Family history

Tragedy first struck Ms Mohamed's family when her eldest brother died at 10 months old.

Doctors were unable to identify the cause of his death at the time, but the family's medical history now indicates that it could have been cystic fibrosis.

Her second sibling, Nora, also developed health issues at a young age, often complaining of digestive and respiratory problems.

“She wasn’t gaining any weight, and was constantly throwing up,” Ms Mohamed said.

Although doctors suspected cystic fibrosis, they advised her parents to have another child.

Ehab was born a year later and he exhibited the same symptoms.

Four years later, Nada was born and her symptoms were also immediately evident.

“So it was me, Ehab and Nora all living together under the same roof with cystic fibrosis,” she said.

“We all took medications to manage symptoms but never to treat the disease.”

Nada was only nine years old when Nora died, aged 16.

“I didn’t fully understand what was going on at the time; all I knew was that it was now just me and my brother Ehab,” she said.

A few years later, both she and Ehab were diagnosed with diabetes.

“Soon, Ehab started showing the same symptoms as Nora, and the house was full of oxygen tanks again.”

Ehab died at the age of 21, leaving 16-year-old Nada to confront her fears of suffering the same fate as her siblings.

Around this time, she started relying on oxygen tanks to support her breathing and gradually became immobile.

'Every breath is a gift'

Ms Mohamed's autobiography, mapping her remarkable journey back to health, was featured at the Abu Dhabi Book Fair. She hopes to inspire others battling CF.

“Every breath is a gift, don't waste it,” reads the first message in her book.

She feels that, despite advances in science, there is little awareness and support for those suffering CF.

“In Egypt, the average age of a CF patient is 10 years,” she said.

“So many children die because they are not diagnosed properly. That's how I lost my brother many years ago, but we can't let that happen now.

“Going into 2025, we should have enough resources and awareness about the disease.”

In 2020, Ms Mohamed helped to establish Egypt’s first cystic fibrosis department under the Osret El Ghad charities, to provide financial and psychological support to CF patients.

She also wants to use her degree in biotechnology from Misr University for Science and Technology (MUST) in Giza to help find a cure for the disease that killed her siblings and millions of others.

Her TEDx talk also aims to inspire CF patients around the world.

“Don't give up. I've seen death so many times. I should have died a year ago, but here I am. I’ve seen so many miracles, and so will you,” she said.

Updated: June 05, 2024, 5:01 PM
What is cystic fibrosis?
  • Cystic fibrosis is a genetic disorder that affects the lungs, pancreas and other organs.
  • It causes the production of thick, sticky mucus that can clog the airways and lead to severe respiratory and digestive problems.
  • Patients with the condition are prone to lung infections and often suffer from chronic coughing, wheezing and shortness of breath.
  • Life expectancy for sufferers of cystic fibrosis is now around 50 years.