Hasan Mahamud attend Int’l Scientific Congress on SMA

The 4th International Scientific Congress on the incurable rare disease Spinal Muscular Atrophy (SMA) was held in Belgium. 

Journalist Hasan Mahamud participated as the sole representative of Bangladesh in this high-level 'SMA Europe' conference held on March 14 to 16.

The International Scientific Conference, held at the ICC Ghent International Conference Center in Ghent, Belgium, aimed to bring together an international and multi-disciplinary group of world-renowned scientists and healthcare professionals.

SMA is an incurable rare disease. Like many countries in the world, Bangladesh also has patients affected by this disease. But due to lack of awareness, a large proportion of people suffering from this disease are not getting tested and treated. As a result, many children die due to this disease due to lack of treatment. One of the aims of the conference was to improve the immune system and to share experiences on appropriate treatment using newer methods to treat this disease.

At the conference, the representatives of global renowned pharmaceutical companies Roche Global, Novartis, Biogen Pharma presented their upcoming drugs and programs. Doctors, researchers, university doctors from different countries exchange their research experience. More than thousand doctors and patient advocates from all over the world participated in it. 

About the conference SMA Europe President Nicole Gusset said, the goal of our scientific congress was to bring together an international and multi-disciplinary group of scientists and health-care professionals. We provided a forum for them to present and exchange their breakthrough ideas on SMA, especially also the patient-relevance of their findings, and to cement existing and stimulate new collaborations.

She also said, our scientific congress featured highly respected, internationally renowned speakers. Equally important, it was a platform for talented young researchers. Together with health-care professionals and patient experts, they discussed, debated and dissected significant new developments and advancements relating to SMA. Moreover, they shared their visions for the future of SMA research. By providing an opportunity to exchange scientific evidence and clinical experiences, we trust that the conference was led to ever-improved treatment and care for patients living with SMA.

Journalist Hasan Mahmud took part in the conference as a representative of Cure SMA Bangladesh and highlighted the context of Bangladesh. There are no specific statistics of SMA patients in the country. Cure SMA Bangladesh is believed to have reliable statistics. According to the organization, 163 patients have been identified in the country so far. The organization has compiled these statistics by collecting primary data from several hospitals, clinics, diagnostic centers and pharmaceuticals in the country.

However, members of the organization say that this is not the true picture of the country. In the developed world, it is estimated that one in every 10,000 people has SMA. But in South Asian region including Bangladesh, kinship marriage is more common. So, this number is likely to be higher in this region. Because, this disease is usually caused by genetic problems. And this genetic problem is more likely to occur from men and women in case of marriage of blood related relatives. One of the reasons is marriage between relatives. As such, it is feared that the number of these patients in Bangladesh is very high. But due to the low availability of testing, it is difficult to diagnose.

Those concerned say that if the SMA test could be done easily and at low cost; Then it could be seen that it has spread in the form of an epidemic in Bangladesh. As a reason, they say, despite being a country with six seasons, there should not be so many children with pneumonia in Bangladesh. These patient advocates believe that a large proportion of children with pneumonia in the country are likely to be affected by SMA. The truth of the matter can only be confirmed through testing.

Incidentally, Hasan Mahamud is performing as the chief reporter of risingbd.com, a government-registered online news-portal. Apart from this, he is serving as the Vice President of Cure SMA Bangladesh, the only registered organization working for the welfare of SMA patients in Bangladesh.