Inborn Errors of Metabolism Day (IEM Day ) in India is marked  on the 21 November to raise awareness about IEM diseases that most people will not know of, as well as to improve access to treatment.In Fact that treatment for many IEMS diseases is insufficient, and some peoples quality of life is greatly hindered by inequality, simply because people have never heard of their disease, or do not understand the disease and the patients needs.

 

Since 2011, MERDIndia has been putting in many  platform to rise awareness about IEMS  AND  informative support to   parents , as well as Co-Ordinating events for IEM Disease Day at  national level.

 

Inborn Errors of Metabolism (IEM) comprise a group of disorders in which a single gene defect causes a clinically significant block in a metabolic pathway resulting either in accumulation of substrate behind theblock or deficiency of the product. All IEMs are all genetically transmitted typically in an autosomal recessive or X-linked recessive fashion.

 

 

1= 1 in every 500 to1,000 newborns was observed By Inborn errors of Metabolism 

 

2=India accounted for a staggering 29 per cent of the global deaths of newborns on their very first day of birth and nearly 40 per cent of neo-natal deaths happening on the first day of birth in India.

 

3=Experts point out that a lot of work has to be done towards improving newborn health in India as nearly 5-15 per cent of newborns are sick due to metabolic diseases. A major group of these babies is left with irreversible complications of physical and mental impairment and some die, if affected by severe forms of these conditions.

 

4=Our annual birth rateis 21.76/1000 population. Out of the approximately 25 million new births in India, there are an estimated 1.6 Million babies born with birth defects including about 620,000 with genetic disorders.With no mandatory 

newborn screening at national/governmen tlevels, the country wide burden of genetic disorder sespecially the congenital conditions is huge and still unknown..

 

5=The newborn health challenge faced by India is bigger than that experienced by any other country. As India makes progress in addressing childhood illnesses, reducing newborn deaths remains a critical challenge, making up a growing 

percentage of child deaths. Today, India accounts for the greatest burden of newborn deaths in the world. An estimated 876,000 newborns die each year in India alone (2011 estimates)  accounting for an estimated 30% of the total global 

burden of neonatal deaths and and a staggering 53% of under-5 deaths in India

 

6=Out of every 100 babies born in this country annually, 6 to 7 have a birth defect. In Indian context, this would translate to 1.7 million birth defects annually and would account for 9.6 per cent of all newborn deaths.With a large birth cohort of almost 26 million per year, India would account for the largest share of birth defects in the world. This would translate to an estimated 1.7 million babies born with birth effects annually. Birth defects account for 9.6% of all new-born deaths and 4% of under five mortality. Development delays affect at least 10% children. 

 

7=India is a single country of multiple cultures and genetic traits. The research and data from one state does not necessarily apply to another region. The incidence of CAH is thought to be higher in Southern India; where as incidence of 

G6PD is thought to be highest in Punjab and Gujarat. Thalassemia has its highest incidence in Guajarati,. Disorders mimicking methyl malonic acidemia (MMA) is thought to be higher in vegetarians in south India than in north India. These 

geographical variations and their understandings are very important in planning the health programmes of a country.

 

Note-The facts provided in this news has been sourced from various websites and articles. By no means we claim to be exhaustive or up-to-date.