Imagine a child who is anemic all the time. He cannot survive without blood transfusions every 2 weeks. Could he live like this for the next 80 years or should he opt for a cure that will erase the fear and gift him a pain-free existence? Thalassemia is misunderstood disease. Not many people who are affected get the help they need to combat it. Understanding the disease can go a long way helping you beat it.
What is Thalassemia?
Thalassemia is a genetic blood disorder that causes the body to create an abnormal form of hemoglobin. Hemoglobin is the molecule in blood that carries oxygen to all cells. Due to the disorder, red blood cells are destroyed leading to anemia.Since the body does not have enough healthy blood cells, the patient is always anemic.
What causes Thalassemia?
Thalassemia is a genetic disorder caused by gene deletion or mutation. If one of the parents is a carrier, the child will inherit the disease. It will be thalassemia minor. There may or may not be symptoms. If both of your parents are carriers of thalassemia, the child will inherit thalassemia major. The severity depends on whether the mutation is in alpha globin genes or beta globin genes. Regardless, the patient lives with anemia throughout the lifespan.What are the symptoms of Thalassemia?
Depending on severity, the symptoms of thalassemia can vary. Sometimes, patients are not diagnosed until a few years into their childhood as most symptoms mirror that of a normal fever or anemia. Some people do not even have visible symptoms. If you know someone with thalassemia, here are some symptoms to look out for:- Pale skin
- Excessive tiredness
- Delayed or improper growth and development
- Fever, bleeding, loss of appetite
- Dark urine
The disorder tends to affect patients slowly, so the signs show up during late childhood or adolescence.
Ayaan (5) and Arfath (2) were both diagnosed with Thalassemia when they were just 11 months old. The brothers are close. They comfort each other every time they face the needles. Unfortunately, they are waiting in the line for a cure.
What are the treatment options for Thalassemia?
The treatment for thalassemia depends on the type and severity of the condition. These may include blood transfusions, medications, supplements and bone marrow transplant.What are the effects of blood transfusion?
As soon as the patient receives a blood transfusion he will feel better, as the blood will perform its regular function of distribution oxygen and food. Each blood cell has its own lifespan, and when it dies, it is replaced by the same damaged blood cell produced by the body. So, within 10-15 days, your child’s hemoglobin levels will drop again. With lack of oxygen, his system will feel tired until he gets another transfusion.
She's 12 years old, and yet for half of her life, Epsita has been in hospitals. She was diagnosed with Thalassemia when she was just 4 months old. Since then, she created a world for herself among books. Now, Epsita's condition has deteriorated. She had to drop out of school. She can only get better with a bone marrow transplant.
Risks and side effects of transfusion therapy
There are a few risks associated with transfusion therapy including infections. Symptoms include fever, cough, cold, chills, wheezing, muscle pain, headache, hives or rashes.Transfusion therapy is only to keep the disease at bay. It means rushing to the hospital every few weeks, and frequent expenditure on blood products and medicines.
Alternatives to transfusion therapy
A bone marrow transplant is a cure for thalassemia. It replaces the damaged bone marrow with healthy marrow. The child does not have to live an interrupted life and instead have a normal childhood.How to use crowdfunding for Thalassemia?
Most families who combat this disease in India are those who marry within the family. As there is not much awareness in the rural areas about such inherited disorders, they face such complications. Sometimes, parents end up in loans trying to keep their child alive with blood transfusions. Crowdfunding can ease their pain, and help these children have a better life.
Her son committed suicide and her daughter-in-law ran away on the day of her son’s funeral. Elavarasi was left with their child, Gopinath who was fighting Thalassemia, even before she could recover from the grief of losing her son. The doctors recommended a bone-marrow transplant (BMT) before iron from the transfusions built up in his organs. But the BMT needed Rs 25 lakhs. Elavarasi worked as a cook in two houses and her husband worked as a local electrician. They couldn’t even imagine raising such as huge amount, but this was their grandson and they were determined to get him treated and started a crowdfunding campaign that raised Rs. 20,97,707.
“The support of doctors and so many contributors came like God’s help to us. We were so helpless at that time; if I could, I’d touch the feet of every one of them who donated and thank them for saving my Gopi’s life,” says Elavarasi.Through crowdfunding, the family of the patient can relieve some of the financial strain of the surgery by asking for the generous and compassionate support of the community.
