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8 May – World Thalassemia Day
Kinjal had to take blood transfusions every 15 days, still got married in 2017
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This young couple gave birth to a daughter in the year 2019 and today is living a successful married life with their 5-year-old daughter Navya
Navya
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We never thought of Kinjal’s marriage. We used to think that no boy would be ready to marry her. I have decided to keep her with me for life. Kinjal has also accepted this, yet sometimes she asks me, ‘Papa, will I really never get married?’ and I am unable to give any answer. These are the words of Kinjal’s father Sanjeev Shah.
Kinjal, who has been suffering from thalassemia major since the age of three months. Earlier she had to take blood transfusions once a month, but now she has to take blood transfusions every fifteen days. Naveen Lathi, whose doctors were not ready to give any guarantee of his life span, who was skeptical about the marriage, married her in the year 2017. Naveen fell in love with Kinjal so much that neither Kinjal herself, nor her father nor the doctors could convince him. Today Kinjal and Naveen are living a successful married life with their 5-year-old daughter Navya. Thus this young couple has become an encouraging story for all those thalassemia patients of the society who are suffering from a serious disease like thalassemia major. This couple is also working to bring awareness among thalassemia patients today. Kinjal’s father Sanjay Shah says that we have not even taught our daughter Kinjal to do dirty work yet and in the third month of Kinjal’s birth we came to know that she has thalassemia major. Talking about how her successful married life started, Kinjal says, this love story started when suddenly Naveen called me on Friendship Day. He suddenly proposed marriage to me over the phone. I thought he might not know about my health. I fixed a time to meet him. In the first meeting, I asked him, ‘What do you know about me?’ I told Naveen, ‘I have come to know that you have blood cancer. Still I am ready to marry you. If I marry, I will marry only you, otherwise I will not.’ I told him, ‘I do not have blood cancer but thalassemia major.’ I have to get blood transfusion every fifteen days. My life expectancy is not certain. I do not want to get married and our families are not ready for this relationship, but he did not agree. Within a month or two, I realized that this boy can support me till my last breath and I said yes to him. My uncle Dr. Chirag Shah and Dr. Anil Khatri have helped a lot in my treatment so far. Dr Anil Khatri, who has been treating Kinjal since the beginning and is a member of the Thalassemia Task Force of the Government of Gujarat, says that Kinjal is suffering from Thalassemia Major. I have been treating Kinjal since the beginning. In this disease, the patient has to be given blood transfusion every fifteen days. The life expectancy of these patients is also less than that of normal people. Due to blood transfusion, the amount of iron in the body of Thalassemia Major patients increases. Due to which other organs can also be damaged. When Kinjal’s father Sanjay Shah came to my clinic to meet Naveen for the first time, I clearly told Naveen that Kinjal will have to be given blood transfusion every fifteen days. It is not known when it will be given. The medicines will also be expensive. If you are ready to fight all the problems, then say yes. At that time Naveen kept listening to me and did not say anything, coming out, he told Kinjal’s father, ‘Whatever happens, I am ready to marry Kinjal. I will never leave her.’ Eventually, due to the strength of their love, both the families got them married in 2017 with mutual consent. Dr. Anil Khatri says that it is difficult for thalassemia major patients to live a normal life, but giving birth to a child is quite challenging for them. In the desire of motherhood, Kinjal decided to give birth to a child. In July 2019, Kinjal gave birth to a baby girl. Her daughter is now five years old and is healthy.
What is Thalassemia?
Thalassemia is a genetic disease in which the body fails to produce enough hemoglobin. Normally, our red blood cells contain a protein called hemoglobin, which carries oxygen to all parts of the human body. We get iron from the food we eat and the bone marrow present between the bones converts this iron into hemoglobin.
The bone marrow of a person suffering from thalassemia is unable to convert iron into hemoglobin. Due to this, other organs of the body do not get enough oxygen and the functionality of the organs is reduced. Due to the weakening of the organs of a person suffering from thalassemia, he eventually has to face many problems and diseases.
What can be done to prevent thalassemia?
Dr. Anil Khatri says that there is no permanent cure other than bone marrow transplant to prevent major. To eradicate thalassemia from the root, every person should get tested for minor thalassemia before marriage or before conceiving. If both the eligible are minors, then they should not get married. Even if marriage happens unknowingly, the child growing in the womb should be tested during pregnancy. If the child is an adult, then it is imperative to complete the abortion legally.
To make citizens aware about a deadly disease like thalassemia, “International Thalassemia Day” will be organized on May 8.
Thalassemia Day” is celebrated every year. Thalassemia is an incurable hereditary blood disorder, which directly affects the production of hemoglobin in the body. This special day is celebrated every year on 8 May to reduce the outbreak of this dreadful disease through public awareness and to remove the ignorance of citizens about this disease. No parent wants to see their child trapped in the bondage of a blood bottle, but due to lack of awareness about hereditary blood disorders like thalassemia, many children around the world are born with a life-threatening disease like thalassemia. Today, along with the country and the world, the state of Gujarat is also working towards eradicating an incurable disease like thalassemia. The central and state governments are working together with various organizations to create public awareness about thalassemia. Since most people do not know about thalassemia, the first question that arises in their mind is what is thalassemia and why is this disease so serious? … So let’s know something about thalassemia disease today Let’s know the important things in detail.
What is Thalassemia?
Thalassemia is a genetic disease in which the body fails to produce enough hemoglobin. Normally, our red blood cells contain a protein called hemoglobin, which works to deliver oxygen to every part of the human body. We get iron from the food we eat and the bone marrow present between the bones works to convert this iron into hemoglobin.
The bone marrow of a person suffering from thalassemia is unable to convert iron into hemoglobin. As a result, other organs of the body do not get enough oxygen and the functionality of the organs is reduced. Along with weakening the organs of a person suffering from thalassemia, they have to face many problems and diseases.
Types of Thalassemia-
Thalassemia is generally of two types, thalassemia minor and thalassemia major. When a child has a defect or abnormality in the chromosomes of one of the parents, he becomes a victim of thalassemia minor. When both the parents of a child have defects or abnormalities in their chromosomes, then he/she becomes a victim of thalassemia major.
1. Thalassemia minor: Thalassemia minor is also called thalassemia carrier or thalassemia carrier. Thalassemia minor has defects or abnormalities in the chromosomes, but since it does not cause any disorder, they are usually healthy and symptom-free. That is, anyone who looks healthy from outside can be a thalassemia minor, including you.
About 40 million people in India are thalassemia carriers. Out of which 8 out of 10 people do not know that they are thalassemia carriers. That is why getting tested for thalassemia is the most important decision for the future of any person and his/her family.
2. Thalassemia major: Thalassemia minor is not a disease but a chromosomal abnormality, whereas thalassemia major is a life-threatening disease. If both husband and wife are thalassemia minor, then their children are at risk of developing the disease. The chances of having thalassemia major are 25 percent. Apart from this, if one of the spouses is thalassemia major, then the chances of the child having thalassemia major also increase.
People suffering from thalassemia major suffer from many serious problems like anemia. Every year about 10,000 to 15,000 children are born with thalassemia major in India. Usually, due to lack of blood in the body of thalassemia major, they have to be given regular blood transfusion every 2 weeks, only then they can be saved. Children suffering from thalassemia major need lifelong treatment.
What can be done to prevent thalassemia? Dr. Anil Khatri, Chairman of the Hemoglobinopathy Committee of the Indian Red Cross Society, Gujarat Branch, says that there is no permanent cure for the prevention of thalassemia major except bone marrow transplant. To eradicate thalassemia from the root, every person should get tested for thalassemia minor before marriage or before conceiving. If thalassemia minor is confirmed in the test, then one should avoid marrying a carrier of thalassemia minor. Even if marriage takes place unknowingly, the child in the womb should be tested during pregnancy itself. If the child is big, then it is necessary to get a legal abortion. Gujarat is doing the best work in the country for the prevention of thalassemia..!!! The Gujarat government has been doing the best work for the last 15 years to eliminate thalassemia from Gujarat. With many innovative initiatives and strong planning in this field, Gujarat has become a role model for other states. Thalassemia testing of pregnant women coming to all government hospitals in the state is done free of cost by the state government. Innovative campaign to create community based public awareness
The Gujarat government has taken many special initiatives for the prevention of thalassemia. One such special initiative is – thalassemia testing at 3 levels. With the help of the Government of India, National Health Mission and various charitable organizations, the state government is conducting thalassemia testing of students at the university level itself. Apart from this, since some of the students of Gujarat are pregnant, the government has started testing thalassemia at the university level. In communities or societies where the prevalence of thalassemia is high, the state government has also taken special initiatives to make these communities aware about thalassemia through various organizations by implementing community based screening.
Every year in Gujarat
On an average, 18,517 people are screened for thalassemia every year and a total of more than 15.50 lakh people have been screened so far. The Gujarat government is working in collaboration with the Red Cross Society, Thalassemia.
Many organizations like Miya Jagriti Foundation and Thalassemic Gujarat are doing commendable work to make people aware about the need to eradicate thalassemia.
Blood donation will be a great donation for thalassemia patients
Any thalassemia patient needs about 15 to 60 bottles of blood annually. It is also very important for thalassemia patients to get the best and pure blood in sufficient quantity. If the citizens of the state donate more blood, then thalassemia children will be able to get good and sufficient blood. The Gujarat government, in collaboration with various organizations, is also at the forefront of collecting blood for thalassemia children by organizing blood donation camps across the state. Along with this, some organizations in Gujarat are doing a good job to make the rest of the life of thalassemia children happy.
Today on the occasion of Thalassemia Day, let us all pledge to make Gujarat Thalassemia free. If citizens become aware about thalassemia, get tested for thalassemia as early as possible, tell people around them about thalassemia, and help people suffering from thalassemia by donating blood, then Gujarat will definitely defeat thalassemia in the future.
