Thalassemia, love and marriage in India

 
Sandeep Kukeja, Thalassemia Major Patient and Author

Sandeep Kukeja, Thalassemia Major Patient and Author

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People who live with severe forms of thalassemia will most likely encounter some form of social prejudice in their lives. Prejudice comes in the form of being teased, shunned, discouraged, mocked, or just plain cast aside for having an illness.

When I read the blog post by today’s author, I was saddened to know that prejudice can sometimes come from one’s own parents. I have heard many stories about how parents of thalassemic children often lack emotional support and care, sometimes to the point of abandonment.

Today’s post from Sandeep Kukreja brings up a very important topic: marriage and parental prejudice. Especially when it comes to people with thalassemia marrying those with the same illness.

Parents who have children with thalassemia should begin to allow their children to marry others with the illness. This will have a great impact on society and you will begin to see major changes in others once you change yourself.
— Sandeep Kukeja, Thalassemia Major Patient

Please read through Sandeep’s points and share your thoughts on what he says in the comments section below the article.

Thalassemia and Marriage by Sandeep Kukeja…

Thalassemia is not a dangerous disease. Today millions of people in the world are living with some form of thalassemia (i.e., they’re diagnosed with thalassemia minor or considered carriers). When babies are born with thalassemia, their parents begin thinking about that child’s future. They wonder if they can treat their child who has thalassemia just as they would any other child. My opinion is YES. Unfortunately, many people do not see things as I do. Societal ignorance is the most common problem for children who have severe forms of thalassemia.

When a child with thalassemia turns 18 years old, his or her hormonal changes are the same as anyone else’s. Many thalassemia patients wonder if they are going to be able to find a life-partner. They oftentimes fear societal ignorance and the possibility of getting rejected. Everyone wants to get married, but in India people see thalassemia as a dangerous disease. Society makes it difficult for parents to give their daughter’s hand in marriage to a thalassemic boy.

Parents believe that people with thalassemia make good friends or boyfriends, but not good life-partners. Lack of awareness makes parents afraid and this stops them from allowing their healthy sons and daughters to marry someone with thalassemia.

After a certain amount of time, the person with thalassemia becomes frustrated after getting rejected over and over by healthy boyfriends or girlfriends.

If someone who has thalassemia wants to be with another person who also has thalassemia, there is a different problem. Nowadays, thalassemic girls are unable to accept or understand thalassemic boys and vise versa. Many say they want to be independent. This is not his/her fault. This is due to parents who smother and give too much attention to their thalassemic children. That extra parenting makes people with thalassemia believe no one else can provide them with the same level of love or attention they’ve received from their parents their whole lives.

Some people with thalassemia major never lose hope. They begin searching for their soulmate, no matter what. Then, just when things seem to be going well, they get infected by diseases like Hepatitis B, Hepatitis C, HIV, etc. This means that people with thalassemia don’t only face the stigma of thalassemia, given to them by society, but they also have to suffer from the secondary diseases caused by thalassemia.

After many years of suppressing feelings and feeling isolated, the thalassemia patient feels so disappointed by life that they become depressed, which is a big problem.

My question is why can’t a boy or girl who has thalassemia also have hopeful dreams for their future? We too have hearts that wish to beat for someone else.


We Both Are Thalassemic.png

Then there are cases where the boy and girl who both have thalassemia want to be together, but their parents don’t agree with the relationship. They believe their child should be with a healthy person instead. My question is why? If both parents who have thalassemic children don’t understand their child’s wishes, how do they expect anyone else in society to understand?

Maybe two people with severe thalassemia can’t give birth to a healthy baby, but this shouldn’t stop them from getting married. They can always adopt a baby or use a surrogate mother as an option. So stop this thinking.

I’ve met so many 18+ teenage thalassemic boys and girls who are eager to get married. They try so hard to meet someone -- even using social media to connect. They don’t want to lose hope, because if they lose hope, they’ll never fulfill their dreams for a happy married life. All they wish for is some sort of normalcy.

My opinion is that if a man who has thalassemia is able to cover the cost of medicines, blood transfusions, and medical checkups of his potential bride who also has thalassemia, parents must put this into consideration. After all, don’t they have the same rights as healthy people?

I want to say that parents who have children with thalassemia should begin to allow their children to marry others with the illness. This will have a great impact on society and you will begin to see major changes in others once you change yourself. I also want to say that if both people (who have thalassemia) accept each other, then society should also approve and accept them equally.

There can be many advantages to having two people with thalassemia marry. For example, they can provide each other with emotional support; they can care about whether each has taken their medicine on time; they can check if each has gone to their blood transfusion appointments; and they can even monitor each other’s iron level. If you allowed this to happen, they would look like any other normal groom and bride.

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Marriage is about caring, loving, and accepting another person the way that he or she is. So I think if two people with thalassemia accept and love each other, they must marry. Life is important and in the end, the only person we will have next to us is our life-partner.

Thank you for reading. Please let us know how you feel and what you think in the comments below.

To your good health,

Josephine (and today's guest author, Sandeep Kukeja)