8th May is observed as World Thalassemia Day (WTD) in view of one of the most common blood disorders, Thalassemia.
As per the Thalassemia International Federation (TIF), approximately 7% of the world population is a carrier of a severe hemoglobin disorder, including Thalassemia, and between 300-500 thousand children are born each year with a severe haemoglobin disorder.
The TIF has defined Thalassemia as genetic disorder of the blood and specifically, the haemoglobin protein that is contained in the red blood cells and is responsible for carrying oxygen to all the tissues and organs of the body.
With the theme Thalassemia past, present and future: Country practices, progress and growing recognition of patients’ rights for 2018, the TIF addressed the current situation of Thalassemia across the world and the rights of patients suffering with the disorder.
With the vision to create awareness and discuss prevention measures for Thalassemia, the WHO established May 8th as World Thalassemia Day.
As per 2013 statistics, thalassemia occurs in about 280 million people. It is most common among people of Italian, Greek, Middle Eastern, South Asian, and African descent.
However, with the passage of years, the world has seen a decline in deaths caused by Thalassemia. The date rate among patients came down from 36,000 in 1990 to 16,800 in 2015.
Scenario in Nepal
Around 250 Thalassemia patients are registered with Nepal Thalassemia Society (NTS) and around 300 patients get blood transfusion in different hospitals of the country.
The NTS was started 8 years ago to raise funds and support a blood transfusion center in Nepal. Today the organization has been able to collect enough funds from friends and family in the UK, from where the operations are headed. The NTS-run Nepal Clinic supports over 140 Thalassemia children. Setup by the NTS, in Kathmandu, the clinic offers hope and a promising future to the many patients in Nepal.
Paras Nath Mishra, a resident of Tilathi 3 in Saptari, Nepal was the first person to be diagnosed with Thalassemia. He was identified with the disorder when he was only a year old.
He was taken to many districts and regional hospitals for treatment, but the real cause of his illness was not identified until he was taken to India to Dr. BB Bhattacharya.
At the age of 9, Paras lost his sister to Thalassemia leaving him scarred for life. The disease was unknown till then.
Paras recollects the struggle his parents had to go through due to their children’s illness. “Due to our inconsistent health declination, our parents suffered a lot. There was no other choice of selling land for our medical expenses, so my father sold the land.”
But Paras’s illness did not deter his spirit. He completed his bachelor’s degree and was very keen on helping others. He eventually kept his studies aside and came to Kathmandu to work for the welfare of Thalassemia patients. He spends most of his time counselling, motivating and handling Thalassemia cases and supporting them.
A trust has been established under his name ‘All Nations Paras Thalassemic Care Trust’ that is run by his guidance.
In view of World Thalassemia Day, the NTS organized the 25th International Thalassemia Day summit. The event saw the attendance of the prominent persons of the health ministry.
Addressing the occasion, State Minister Aryal said that the ministry is working on allocating budgets from the next fiscal year for patients suffering with Thalassemia, Sickle cell anemia and 8 other diseases including Hemophilia.
The treatments and drugs for Thalassemia are very expensive and so Director at Department of Drug Administration (DDA), Prasad Dhakal has assured to arrange for the required medicines for the patients.
He has assigned NTS with the task of preparing a list of drugs required. He also added that the DDA has granted permission to the NTS to buy drugs that are nearing expiration. “Since there are very few patients of Thalassemia, DDA did not include the drugs in the procurement list.” Speaking further he said, “DDA will focus on the production such drugs within the country.”
Thalassemia is an issue of concern and if not given the proper attention and care, the disease may prove fatal to the scores of patients out there. With support and encouragement from the Government and the Thalassemia societies, patients can have a chance of survival and fulfill all their dreams.