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In this era of the coronavirus pandemic, we often talk at length about the repercussions caused by the Covid-induced lockdowns and restrictions: how many people lost their livelihoods, how many slipped into depression, how many lost their lives, and so on.
Only when we became homebound did we realize the feelings of an innocent prisoner who has to endure the agony of living in a lockup. Sometimes we thought of the hardships of the working class, other times we thought of people hit by the coronavirus pandemic. But whether someone dies accidentally or suffers from some disease, their family undergoes a cataclysmic situation that is beyond description.
But have you ever wondered that there are many patients who are supported by others, who truly appreciate every single breath of life with our help? Have you ever wondered that we stay at home in these difficult times and enjoy every blessing of the Almighty, but what will happen to those who are afflicted with more than one disease, who with every passing day also worry about managing blood for mere survival?
Yes, I am talking about thalassemia patients here, who are constantly fighting with themselves. Whether it’s coronavirus or some other disease, they have to fight it. Thalassemia, which is a life-threatening blood disease, has invariably eluded a discussion at the state or government level.
Thalassemia is a blood disease whose patient can only survive as long as they receive blood. There are an estimated 200,000 major thalassemia patients in Pakistan and if this situation continues, it is estimated that there may be 1.5 million minors affected by this disease in Pakistan.
Rawa’s team had a special meeting with Ayesha Mahmood, who is battling thalassemia, and she explained the disease in detail.
Talking to Rava’s team, Ayesha, a minor girl battling thalassemia, said that support is most needed in this disease because it is important that you do not consider your child a burden. In response to a question about inter-family marriages, Ayesha said that it is very important to be aware of this at the government level. Inter-family marriages are not prohibited at all, but a test must be done before doing so in order to protect the future generations from this deadly disease.
She further said that no action is taken at the government level even in the case of medicines for patients living on blood. Ayesha told Rava that it is a tragedy that we still do not know how many thalassemia patients there are in Pakistan so far because we have never taken it seriously.
Referring to Covd-induced lockdowns, Ayesha said that during this difficult time, there was a double challenge for thalassemia as blood camps, workshops and school colleges in Pakistan collect blood donations.
“Since there was no such activity during the lockdown, thalassemia patients had to fight two wars at the same time, because people were so scared of the coronavirus that there was a fear of donating blood,” she said.
“And that’s why we appealed to the people for help through a video message, after which the common people also came forward for help.”
Regarding thalassemia, Ayesha said that the message is first and foremost for parents to treat their child who has thalassemia in a normal way, rather than force them to live like a patient as they are already waging a war and it’s unjust to put them in double dilemma. “They should instead encourage them with their positive attitudes,” she emphasized.
It’s pertinent to mention that World Thalassemia Prevention Day is observed every year on May 8 in different countries of the world including Pakistan.
What is thalassemia and why is it so dangerous?
Thalassemia is derived from the Greek word thallus which means sea and amia means blood. The disease was first diagnosed in Greece and is now common all over the world. Starting from the west, the disease traveled to as far afield as Africa, the Middle East, Iran, Pakistan, India, the Far East, China and Indonesia.
Thalassemia is a serious blood disease in which the formation of hemoglobin in the blood cells of an infected patient stops the formation of blood.
Thalassemia is an inherited blood disease, which is passed from parents to children. In this disease, the child loses their life at a certain age, and the patient constantly needs blood.
Fatigue is a major factor in children and adolescents. Patients with thalassemia are more sedentary than others. The disease causes patients to have yellowing of the skin and may also suffer from bone disorders.
Ignorance of thalassemia
Unfortunately, Pakistan is also one of the countries in which the number of children with thalassemia has increased a lot. If this situation continues, we will face a lot of problems. It is transmitted to children. Ignorance is the biggest reason that leads us to this disease. If we know how to prevent this disease, we can get rid of this disease.
There are many couples in Pakistan who get married happily, but soon they get into trouble. In our society, any test before marriage is considered a taboo, hence a high probability of such diseases. But the pain of a child with thalassemia can only be felt by their parents; we cannot tell by looking at the face of the blooming roses what fight they are fighting.
Worse, treatment of this disease also needs a lot of money, and in a country where there is unemployment, poverty, problems, disease becomes a burden.
The complete treatment for thalassemia major is a bone marrow transplant which is available at the National Institute of Blood Diseases, Karachi. However, not everyone can afford this costly treatment, nor is it suitable for every child. There’s another method of treatment in which healthy blood cells begin to form with a specific medication and there is no need for a blood transfusion, but it is not suitable for every child.
How can thalassemia be prevented?
We can get rid of this disease like many countries, and can make Pakistan a thalassemia-free nation. There are many people who have thalassemia minor germs; if one thalassemia minor is similar to other thalassemia minor, then thalassemia becomes a major. If we get the boy and girl tested before marriage, we can avoid this disease.