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Thursday, 09 April 2020

The untold story of a once-dubbed 'orphan disease'

Sir Magdi Yacoub sheds light on pulmonary hypertension in Egypt

Ingy Deif, Sunday 8 Mar 2020
Awareness campaign on pulmonary hypertension in Egypt
Awareness campaign on pulmonary hypertension in Egypt
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The anticipation was felt in the air as attendants waited for the panel of experts to take the podium, led by one of Egypt's most respected and loved figures in the field of science, Sir Magdi Yacoub.

Magdi Yacoub — who was bestowed with the title of Sir by Queen Elizabeth II — is a pioneer in the field of cardiovascular surgery and the founder of the Magdi Yacoub Heart Foundation in Aswan, which is a non-profit, non-governmental organisation providing free world-class medical services to the less privileged in Egypt and throughout the region in the field of cardiovascular diseases.

The event, held 6 March in collaboration with the private sector pharmaceutical Janssen, shed light for the first time on a disease once classified among rare disorders and now regarded differently.

"Pulmonary hypertension is a fatal disease, one that is rampant in many developing countries. Many Egyptians now are diagnosed with the condition. We used to regard the disease as rare and called it the 'orphan disease.' Well, not anymore," said Yacoub.

"It is very important to raise awareness that science can reach with a helping hand to those who are suffering the condition, whether through medication or surgery, provided that early diagnosis occurs," he said.

According to the World Health Organisation, pulmonary hypertension is a certain type of high blood pressure that affects arteries in the lungs and the right side of the heart.
The risk of developing pulmonary hypertension is augmented in young age, and in the case of being overweight, having a family history of the condition, using illegal drugs, or certain appetite-suppressing medication.

Dr Ashraf Hatem, former minister of health, explained that pulmonary hypertension is classified into five types, four of which are due to other health issues, including bilharziasis, and respiratory and cardiovascular diseases. The fifth occurs independently, due to defects in the arteries, or to unknown reasons. The latter was one of the main concerns of the 6 March convention.

The problem of late diagnosis was a focal point of discussion. "A study on patients in Kasr El-Aini Hospital revealed that 20 percent of pulmonary hypertension is unrelated to other ailments and occurs separately. And unfortunately, 70 percent of patients come to us at the third or even the fourth stage of the disease, due to misdiagnosis, as the symptoms are perplexing even too many doctors," Hatem said.

The perplexing symptoms could be overlooked or linked to other health problems, all of which augments the problem of late diagnosis.

"Symptoms include dizziness, short breath, fatigue, chest pain, heart palpitation or swelling in the leg or ankle," explained Dr Medhat Abdel Khalek, professor of pulmonary medicine at Cairo University.

Dr Youssef Amin, head of the pulmonary hypertension unit at Kasr El-Aini Hospital, underlined that tackling the disease necessitates the collaboration of many fields of medicine in the process of diagnosis and treatment.

Sir Yacoub drew attention to the fact that the numbers are alarming, especially that the disease affects people at a very young age.

"Women are more vulnerable. It strikes them as early as in their thirties. It saddens me when young people perish needlessly at such an age, when with proper awareness among people as well as doctors, their precious lives can be saved,” he said.

"After raising awareness as a top priority, two issues are of utmost importance. First, is the urgency of providing medication for the disease, and affordable to patients and institutions. The second is the importance of further introducing the issue of organ donation and transplantation to the mainstream. Our current constitution underlines the sacredness of human lives and the necessity of all measures to preserve lives. Many patients living with pulmonary hypertension may need transplants, and again media and religious institutions should further tackle the topic and dispel misconceptions in that regard."

"We are all in service of the human being and science. No life should perish needlessly," Yacoub concluded.

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