In late April this year, everyone was walking on eggshells with the second wave of Covid-19 on a rampage. Every second person seemed to be infected with the virus, battling symptoms of varying degrees. Their family members were running from pillar to post to save them – unfortunately failing in many cases. One groggy morning during this blur of a phase, I received a phone call from an old friend, who I’d kind of lost touch with. Usually reticent to answer phones, this one I picked immediately – I instinctively knew something was wrong. And it was. So so wrong.
A dear, sweet full-of-life 35 year-young friend of mine from college, had passed away in the wee hours. The deadly disorder she had battled all her life with sheer force of will – Thalassemia Major – just could not stand up to the addition of the Covid virus in her body. From what I hear, the end was quick. She had contracted the virus and was recuperating, then went in to hospital for her routine bi-weekly blood transfusion (the only fail-safe cure for Thalassemia Major), but once in hospital, she declined rapidly and swiftly, and just like that, Shaoli Rudra was gone.
I was first introduced to this word ‘Thalassemia’, when I met Shao in college. I knew it as an affliction that affected a person physically, while leaving cognitive faculties safe and sound. In the simple ignoramus manner of an 18-year-old, I never attempted to delve deeper in the issue – what it was, what caused it, could it be prevented? And honestly, no situation ever arose where I was informed that I must know more about this disease.
To explain what I mean, think of it like this –
- We have all grown up with the knowledge of HIV and are aware that unprotected sex is a terrible idea because we may contract HIV.
- We have all grown up with the knowledge that contaminated food and water carry diseases, and are aware that we should avoid eating street food or fruits and vegetables without cleaning them properly.
- We have all grown up with the knowledge of mosquito-borne diseases like dengue, and are aware that we must wear mosquito repellant to prevent being bit, when the disease is at its height every year.
Then why were we never told about Thalassemia Major? This disease is spread through humans – why do we not know about our role in it?
If we carry a Thalassemia Minor gene, and choose to marry a person who is also the carrier of the same gene, there is a high likelihood that a child suffering from Thalassemia Major will be born of this union. This child grows up dependent on others for survival, requiring life-long, expensive, and difficult mode of care.
After Shao left us, I began my research in earnest. After speaking to patients, parents of patients, and reading extensively on the subject, I’d now like to do my bit by spreading knowledge about it, in the hopes of aiding prevention till a feasible cure is found. So, after that rather lengthy introduction, here are some basic questions answered:
What is Thalassemia Major?
Thalassemia is a rare genetic blood disorder that affects the ability of the human body to generate hemoglobin from red blood cells. When the body runs out of healthy RBCs, it leads to the failure of multiple organs and death. It has two mutated forms – Minor and Major – with no extant symptoms visible in the case of the former, and serious consequences in the case of the latter. Thalassemia Major is the result of two mutated genes combining, which happens when both parents are carriers.
How Many People in India Have Thalassemia?
India holds the distinction of having the largest number of Thalassemia Major patients, around the world. Every year, 8000 -10,000 Thalassemic babies are born in India. Due to acute lack of awareness, parents don’t even know to get themselves tested beforehand.
Can Thalassemia be Treated?
The only effective cure known at this point in time, is stem cell transplantation of the bone marrow. You don’t need me to tell you, that this is both risky and entirely out of reach as a feasible option for most of our population. Even those who can afford it, have no guarantee of finding an ideal donor match. Hence, the only way Thalassemics survive, apart from reliance on medication, is by receiving regular blood transfusions so that healthy red blood cells are placed in their systems, every two-three weeks.
Is Anyone Doing Anything for this Cause?
Fortunately, yes. In the 1980s, some parents of Thalassemics rallied together to form what has now become the nodal body to spread awareness and carry out relief measures for patients. Thalassemics India is an an NGO that operates in close association with doctors, state and central governments, hospitals, as well as Thalassemia associations and centers around the world and India, with the singular purpose of bringing this disorder and its pitfalls to everyone’s attention.
The organization regularly partners up with the Indian Red Cross Society to organize blood donation camps. It runs a Thalassemia screening center, and encourages people to come in for testing through dedicated social media and other campaigns. They also readily help out when parents of Thalassemics cannot afford treatment on a regular basis, by providing funds. By working closely with the government, they hope to achieve their goal of educating citizens on the need for timely testing.
There is no doubt of the fact that they’re doing great work. In addition to their work, the young guard – the patients themselves, launched the Thalassemia Patients Advocacy Group in 2017. Set up by and under Thalassemics India, this organisation adopts a multi-pronged approach to address policy gaps, infrastructural issues and systemic challenges for prevention and management of Thalassemia. They are pushing for mandatory thalassemia screening of pregnant women.
The group consists of patients of thalassemia who are professionals in fields like law, medicine, psychology, photography, engineering and have a large network of more than 1,00,000 thalassemic patients pan India.
What Problems Have Thalassemics Faced in the Pandemic?
The acute shortage of donor blood during the pandemic, has left scores of seriously ill Thalassemics at the brink of survival. Why is there a shortage of blood, you ask? Well….
- People are afraid to donate because they may catch the Covid virus when they go to donate
- People are afraid to donate because if they or their family members fall seriously ill, their blood / plasma may be needed for that purpose
- Even if people are willing to donate, many centers demarcated for donations have been closed and converted to Covid facilities
- FEAR OF CATCHING THE VIRUS:
As evident from the case of Shaoli, the virus may prove deadly for Thalassemics. With hospitals refusing to demarcate separate areas for Thalassemics to receive blood without coming in contact with Covid-positive patients, those suffering from Thalassemia are afraid of venturing out for their routine and life-saving treatments.
- LACK OF PRIORITY VACCINATION:
This point is particularly sad. In early April, well before Shao had contracted the virus, she tweeted to the Brihanmumbai Municipal Corporation questioning why they were not vaccinating compromised individuals under the age of 45? Even now, when the vaccine has been made available to everyone over the age of 18, there is no priority allotted to those suffering from disorders like Thalassemia. So unfortunate.
What Can You Do to Help?
Ok, now after this super long-winded post, let me get to the point. As regular people, we cannot do much about points 2 and 3 listed above, but point 1 is entirely dependent on us.
DONATE, DONATE, DONATE please!! Let go your fears and donate. YOU CAN SAVE A LIFE…. OR 3! Yes, 1 unit of blood serves three people.
So, this WORLD BLOOD DONOR DAY, let’s pledge to donate blood if we are healthy individuals, with normal haemoglobin levels, not on any medications and not suffering from any disease. Oh, and also, get yourself and your partner tested for Thalassemia before deciding to have children (check with your doctor for the correct procedure).
Thanks, and I wish you well.
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