Taboos have to be challenged

ABU DHABI // Doctors say a more meaningful dialogue is needed to raise awareness of conditions that are neglected because they are rare, unusual or simply unknown.

Dr Majid Bassuni, a consultant in general, laparoscopic and colorectal surgery at Medeor 24×7 Medical Hospital, said many disorders were not well known or understood in the UAE.

“That is usually due to cultural barriers and inability to talk about these private conditions openly,” he said. “More media campaigns by specialised doctors need to be initiated to talk about these conditions and break the ice.”

Dr Imad Yassin, a consultant in paediatrics and neurology at Medeor 24×7, said rare diseases were also referred to as “orphan diseases” – conditions that affect a very small percentage of the population.

In Europe, a disorder is defined as rare when it affects fewer than 1 in 2,000 citizens.

On many occasions, said Dr Yassin, diseases and disorders were so uncommon doctors struggled to diagnose them.

“Rare diseases as a whole represent a large medical challenge,” said Dr Yassin. “Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem.”

Dr Deema Sihweil, clinical director and psychologist at Dubai’s Carbone Clinic, said many “hidden” abilities were often overshadowed by the symptoms or physical manifestations of disabilities.

“For example, the most prominent disability that affects children are specific learning disorders,” she said. “Often, schools continue to label children as being lazy, unmotivated or troublesome.

“Many ‘disabilities’ are really just ‘differences’. The education curriculum must be able to identify these unique differences and help children develop the interests they love and what they are able to do, rather than focus on what they are not able to do.”

The UAE Disability Act, passed in 2006, stipulates that Emiratis with disabilities have the same rights to work and occupy public positions.