When asked if one knows of Thalassemia many times people draw a blank. They have a questioning look in their eyes. And I am speaking of educated masses. In order to increase Public awareness of the disease Thalassemia, the World Health Organization established the 8th of May as World Thalassemia Day.
World Thalassemia day has become very special for patients with Thalassemia as it makes people aware thus giving them a chance to check themselves earlier and prevent the oncoming of the disease.
This event promotes and encourages the common public for the pre-marriage test to reduce the genetic problems among families.
Thalassemia is an autosomal recessive blood disorder and is inherited from the parents through genes. This disorder weakens and destroys red blood cells, causes mild or severe anaemia by affecting the formation of haemoglobin in the body. It can affect any age group. It being genetic children who are the citizens of tomorrow are affected. It thus becomes the necessity of the government to prevent the world from this fatal inheritable disease.
The complications that occur are that of bone deformities, iron overload, cardiovascular illness, heart palpitations, enlarged liver, jaundice, enlarged spleen, enlarged bones of cheeks or forehead, delayed puberty etc.
People affected by Thalassemia need blood transfusion on a regular basis, or a bone marrow transplant, which often is a challenge, and it is highly expensive.
The first step to diagnosing this illness is via a Complete Blood Count (CBC). Mild Thalassemia can go undetected until a CBC. Often Thalassemia is diagnosed as anaemia and people suffering from Thalassemia are treated for anaemia. People affected by Thalassemia Major need to go through a blood transfusion or a bone marrow transplant.
7000 to 10,000 children are born with thalassemia per year in India. The same number of children die every year because of Thalassemia. It can be of any type such as alpha thalassemia, beta thalassemia, delta thalassemia and a combination of other hemoglobinopathies (haemoglobin C, D, E and S)
Sameer Nikam and the Maharashtra Society for Thalassemia
Sameer Nikam who is the secretary of Maharashtra Society for Thalassemia conducts regular programmes to build awareness on thalassemia among the public. According to him, there is more work to be done besides just building awareness. What is of utmost importance is to understand the state of mind of people who are relatives of those affected by thalassemia. And bring in a change in their thinking.
There are maximum cases of Husbands leaving Wives, blaming their wives for giving birth to a child who has Thalassemia. There are in the recent past 30 such cases in Mumbai, 5 cases in Pune, 6 cases in Nagar. At times a parent commits suicide suffering from the guilt of not being able to afford treatment for the child.
A mere blood transfusion or treatment by medicine alone costs approximately a lakh of rupees per year. A blood transfusion can cost anything from 12 lakhs to 15 lakhs. However, finding a match becomes a severe challenge.
People have to become aware that no one is individually responsible for having a child suffering from Thalassemia. It is genetically transmitted, and not one individual parent is responsible. This education has to be meted out to people.
Mr. Sameer Nikam the secretary for Maharashtra Society for Thalassemia shared with me the numbers of a few families affected by this disorder. I decided to call up two such families to understand their predicament.
Life has been tumultuous for Mrs.Deshpande (name changed to maintain privacy). Her son’s first blood transfusion took place in 2009 when he was only 3 years old. As a baby, he showed no signs of being a thalassemia patient. It was when they noticed an inflammation in the abdomen that they went to their family doctor who said as per his diagnoses a minor operation would fix it.
Their lack of education and general ignorance led them to believe that the son’s condition was probably because of the father who had polio.
It is when they met another doctor later that they found out he had Thalassemia and that the boy had been battling the same for the last few years.
The first transfusion did not cost much however with the passing years it got steeper as the volume of blood required increased.
Giving their son a healthy life was now their only goal. However, between the treatments and school fees, all their efforts fell short. Even though the husband’s employer increased his pay the parents still could not afford the transfusion and the school feels. Burdened under this pressure the father committed suicide.
In the last 3 months, she has not been able to keep up with his school fees and treatment. She has had to compromise on some of the medication.
She has not given up and is fighting to give the son a chance to fulfil his dreams.
Her journey has not been easy. As far as her memory goes Mrs.Kulkarni (name has been changed to maintain privacy) has been fighting a lone battle.
2 boys aged 10 and 7 now, the younger one was detected with Thalassemia and every 15 days she has to arrange for his blood transfusion which in her state of poverty has been a herculean task.
She was tortured by her husband and in-laws for dowry, beaten and abused; made to rough it out in the rains and threatened to be killed and burnt alive!
The thought that kept her going was to give her son a new life every 15 days. The treatment began at Ruby Hall. However, they could not keep up with the money and so they moved to Command Hospital.
This too now she cannot manage as frequently. Not a day goes by when she loses her resolve and thinks of ending her life. However, seeing her son she holds back. The husband does not contribute a rupee toward his son’s treatment.
He has now remarried blaming the first wife for the child’s ailment.
However, demanding what is rightfully hers in order to give her son a better future is something she cannot do as she cannot afford lawyers.
And between the lawyers and her son’s life, she rather invests in his treatment.
Making People aware is Dr.Vijay Ramanan
Not to be discriminatory, Thalassemia is present in large numbers among the rural population, and educating them is imperative. Also making available money for their treatment, getting a donor who is a match for the patient is a mammoth task.
But Doctor Vijay Ramanan, the best Hematologist at Ruby Hall Pune, the courageous and benevolent soul has been working relentlessly and selflessly on this cause. He is a leading doctor in treating Lymphoma and Leukemia and a pioneer in wheat grass and novel therapies to treat Thalassemia and Hemophilia. He has performed more than 350 bone transplants making him the most sought after and reputed doctor in the country.
Besides conducting huge drives to get donors to donate blood for transfusions for Thalassemia, Dr. Vijay Ramanan conducts talks to educate and make people aware of Thalassemia.
Recently on the 6th of May, Dr. Vijay Ramanan had a talk for over 1500 people in Surat, educating them about the options for Thalassemia Management including Bone Marrow Transplant and Novel Therapy.
Dr. Vijay Ramanan has helped patients get over blood transfusion by treating them with the Novel Therapy he has pioneered. There is a huge write up in the Pune Mirror on how he helped a resident of Kondhwa, who ran from pillar to post to treat their daughter’s ailment. She was initially diagnosed incorrectly. Later with some specialized test, it was discovered she was an Alpha Thalassemia carrier.
Like this, there are many incidents where Dr. Vijay Ramanan has helped patients suffering from Thalassemia.
Under the guidance and treatment of Dr. Vijay Ramanan, Aradhya, the 6-year-old is now undergoing an innovative treatment which involves the use of wheatgrass and she is improving.
A month ago The Maharashtra Thalassemia Society along with Dr. Vijay Ramanan and DATRI the stem cell donor registry had a huge successful blood drive.
Sameer Nikam the Secretary of the Maharashtra Society for Thalassemia said this drive was to invite the relatives of patients to donate not just towards their ailing member of the family but to donate towards the cause so that others also could benefit.
Thalassemia is a global issue. However, we in India still need to become aware of this genetic blood disorder.
My humble plea to those who are reading this is to read some more on Thalassemia to understand the extent of this disturbing illness, and to spread this message to others. You will be in the process I am sure saving the lives of many dying children.