I wrote an article on Thalassemia a few weeks ago. Soon after that, I decided I needed to take this cause further. I was aware that RTI – Round Table India, work closely with schools, with underprivileged children, and on several social causes.
Thalassemia, an illness that needs to be addressed.
I remembered Mr. Lalit Pittie the chairman of Poona Synergy Round Table India 177 speaking of Jackie Shroff being the Ambassador of Thalassemia in India.
I didn’t waste time in letting him know of Dr. Vijay Ramanan the best in the city on Thalassemia and the meeting was arranged. Dr. Vijay Ramanan has for the last few years has made it his mission to bring awareness to the masses about this illness.
The less known illness
The illness is less known among the intelligentsia as well as among the lower strata of society where the illness is in large numbers. It is only by making people aware of Thalassemia would we be able to control this illness.
It being genetic it has a stigma attached to it. The woman is held responsible most of the times, and the man escapes conveniently. Whereas if two Thalassemia Minor partners are locked in marriage the offspring is born a Thalassemia major.
Thalassemia…mostly misunderstood as Anemia
Thalassemia Minor does not need blood transfusion; however, a Thalassemia Major does. The only way to detect it is a Complete Blood Count (CBC) count to be taken… i.e. screening of the blood. This, unfortunately, is many times read incorrectly and diagnosed with Anemia.
Mr. Pittie was very honest in saying that although Jackie gave him some material to read he was still a little confused. Dr. Ramanan explained it well to him. I have in brevity explained in the earlier article. There is an addition here that will help you understand more.
Hemoglobin is one word but there are two parts to it. Globin is not generated in people who have thalassemia. Production is low. It is genetic. Its origin is not well known. Some suspect that malaria could have had a role to play.
For 11 grams of hemo, you need 11 grams globin to have 11 grams of hemoglobin. Say for a normal individual you would need a 15 – 15 count. If someone has 15 grams of hemo and only 8 grams of globin he will have only 8 grams of hemoglobin. As they need to be together. The extra 7 would cause damage later on. This is called Thalassemia Minor.
Thalassemia Minor is very prevalent. The incidence is around 3 to 4 percent in the general population. Not to be racial or discriminative… it is only data. The highest incidence is in the Maldives among the Islamic community. It is 18%. The Maratha community has 8 to 12%. The Sindhi community has 16%.
The reasons for the spread is because Thalassemia is genetic. Marrying in the same community compounds the issue. The only way to control is a screening of the blood.
Mr. Pittie came up with a brilliant idea.
“Why not start the screening from the schools built and refurbished by Round Table India.”
Mr. Pittie is making a school during his term at Pimpri Sandhurst. There are 615 children studying there. Another school made in the last term has 478 children. 1000 children can be screened right away.
Apart from Mr. Pittie’s table, there are other 7 tables who can do the same. So this can be done by the RTI at the National Level also. Tapping schools in the Gramin area would be the best route to take.
Ignorance can damage extensively
Dr. Ramanan began to cite examples of how due to ignorance children were either transfused when there was no need or they were just neglected.
A girl from Hyderabad was transfused for several years. She was being treated by a doctor there. The girl patient wished to get off transfusion and so decided to come to Pune for a treatment that would help her get off transfusion. Ultimately it was found out that the girl did not have thalassemia.
Dr. Ramanan said this is due to:
- Lack of awareness of what is thalassemia.
- Too much knowledge where you transfuse anyone.
These are 2 extremes where it is harmful to the individual and to the society.
The Maharashtra Society for Thalassemia is doing a great job in collecting data. And are also pasting stickers at the back of rickshaws to draw the attention of the public.
8 May is the World Thalassemia Day. Red Cross has been doing its bit in trying to build awareness; however, there is much to do.
Mr. Lalit Pittie then pitched in. “Why not have a press conference where Jackie could be invited and a few other dignitaries who will speak on this topic. We could also have a Marathon on the 8th of May.”
This certainly was a brilliant idea to get the press involved. It is a national issue.
Our Prime Minister Narendra Modi had tried to screen the young ones at schools in Gujarat. However, it was never valued as the gravity of the illness was never understood. 90 percent of the students never came back to collect their report. It was free.
The Larger Perspective
Just imagine 13 lakh children taking blood transfusion every 7 days, 15 days, 21 days, at times 28 days.
20 lakh bags are given free by the Government. The Government spends Rs. 2500/bag multiplied by 20 lakh bags for 12 months. It is free and not valued. In the end, everything has a price. Someone else is paying.
There are blood donation camps every year. We donate 2 crores 40 lakh bags per year. Next year you will again need blood donation camps. Why not stop it? If we are able to stop this imagine the 6000 to 7000 crore rupees per year being saved. One can control the economic expenses by controlling the number of children born with Thalassemia.
The head of the Thalassemia Maharashtra Association, Sameer Nikam, and Samrat Dayal were also seated with us. He maid a point. As he collects data from all the rural areas he sees life at close quarters there.
A girl child who has Thalassemia is not given treatment. It is so ironical that on the one hand we scream save the girl child. And on the other hand, we have this hypocritical behavior.
To cite an example. A lady from Nagar came to a doctor with her third child. He was diagnosed, Thalassemia Major. The doctor asked for the other two children. They had died. Out of this illness for sure. She had the third child for the fear of her husband leaving her. Which he eventually did, only to marry another.
According to him, the wife was responsible for the death of their children. The husband had no idea that he was also responsible as both the wife and he were Thalassemia Minor. Their offspring would be Major.
Thalassemia – Looming Large
In Satara, Sangli, Karad women give birth to 3 to 4 kids who are Thalassemia Minor and are unaware. This is extremely dangerous. The cause for the spread of Thalassemia… complete ignorance.
1 child per hour is born of Thalassemia. 10,000 children a year are born, and 8000 to 9000 births are suppressed. 8000 die of Thalassemia while we have 10,000 taking birth at the same time.
The problem is huge. As citizens of this grand country, it is high time we take up causes that need to be addressed. We also need to be consistent in doing so. Let us not make an illness a stigma.