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.
This blog post is part of the blog challenge ‘Blogaberry Dazzle’ hosted by Cindy D’Silva and Noor Anand Chawla.
*This is not a sponsored post.
**Copyright in pictures and content belongs to nooranandchawla.com and cannot be republished or repurposed without express permission of the author. As I am a copyright lawyer by profession, infringement of any kind will invite strict legal action.
Never knew that Thalassemia is so common in babies and definitely there is a need for more awareness around it.
Sorry for the loss Noor. Firstly, even I was not aware of all the facts about Thalassemia until I read your post. One can surely donate blood and save lives and yes this pandemic has created a panic mode in every one’s life.
Yes sad but true
Firstly, I am sorry for your friend. I know a little about thelesemia as during pregnancy they do check for it to make sure the baby doesn’t have it. I had done this test when I was expecting my kids.
Oh that’s good… Your doctor made you aware 🙂
Talesemia is a.scary situation. However awareness about the same is not there amply. More people should come forward to help kids and adults with talesemia
Yes, its the need of the hour
Yes my cousin is thalsemaia patient and i know the struggle since birth .We must need to be aware of this disease .
Yes it’s really difficult
This was very insightful and great to know that the least we can do is donate. Also, I m surprised at the number of babies born with. thalassemia.
Not many people talk about it unfortunately, and many don’t survive
I lost my maternal granny due to thalassemia. Wierdly, till date many people are afraid to donate blood. I just wish people will let go of that fear.
Yes I hope so too
Noor this is such an important information you are sharing. To be very frank I wasn’t aware and after reading your post I too feel that we should donate blood on regular basis, taking it as our responsibility.
I’m glad 🙂
I got to knew many new things through your post. “The shortage of blood” is on the peak.
Yes I got to know about this ailment as an acquaintance had it and it was unfortunate what all she went through. Its amazing that you are helping those in need. All the best and God bless.
Very helpful post indeed. I agree that at this time blood transfusion is really getting difficult due to the fear of getting affected. Shortage of blood is another issue. One of my colleagues is facing this. Anyway, blood donation is the option we can do for them. Here in Kolkata it’s started maintaining all precautions.
I was in tears while reading this post. I can imagine how tough it was for her to fight for blood and how pathetic the death could be. Thalassemia is a deadly disease and unfortunately there are rare opportunities or costly affairs involve in it. I will donate my blood in future too as I believe helping each others is a part of mankind.
I’m glad you will
Had no idea how much a thalassemic person would be at risk during covid.
This was a heart breaking read, and very informative as well.
RIP Shaoli. 35 is indeed a very young age to pass away. Your post was a an eye opener as I was not fully aware of this condition as well. We take many things for granted when we want to have kids and unintentionally put them at risk or through suffering. Very few of us have the will power to take a stand to not have kids if you know you may pass on a genetic condition. And yes, blood donation is a noble deed. I used to donate atleast thrice a year regularly. Now unfortunately due to medications, I am unable to do so.
That’s wonderful Vasumathi… thrice a year!
Very informative post. Really sorry to hear about your friend. So many young lives lost. People suffering from thalassemia are the worse affected because of the regular blood transfusions.
Sorry to hear about your friend, Noor. You have a raised a very important awareness through your detailed post. I will keep the points in mind and do my bit whenever I can.
It was an important post and I came to know a lot about Thalassemia. Glad that you shared these all information with us.
Very sorry to hear about your friend. People bare not aware of Thalassemia. We need more posts like yours to spread awareness.
That’s so sad to know that you have lost your dear friend at such young age. Om Shanti 🙏. I heard about Thalassemia before but I didn’t know that it’s that dangerous. Thanks for sharing information about this deadly disease.
Truly sorry for your loss, Noor. Although I have never met Shaoli, I had read about her passing and was deeply disturbed. Your post is very informative. I really wish we have a cure for thalassemia soon. Too many young lives lost.
Yes a sad truth
Your post is an eye-opener for all. Thalassemia is a lesser-known disease and such articles help spread awareness. Thanks for the detailed information.
Till a few years ago, Thalassemia was a word foreign to many. It is getting more and more common with each passing year. Glad you wrote this post to spread awareness. Yes, donating blood is one way to help patients.
What a sad ending to a young life…it is so unfortunate. Abroad they have these groups that help Thalassemia Patients. A friend of mine had one son who was normal. The second was born with Thalassemia. This was 35 years ago. That’s when I heard about it. There was hardly any treatment . They asked around and one doctor in Italy said he could cure him by transferring bone marrow from the elder son who was just 4-5 years old. That was also very difficult as both were in danger. But with God’s grace both survived.
That’s a wonderful story of survival 🙂
So sorry for your loss dear. Your post is such an eye opener for us Noor. The word Thalassemia is not new to me though the depth knowledge regarding it is definitely made things crystal clear. Yes by donating Blood we can contribute our bit in saving many lives and nothing is more relieving than this.
I have a friend who has Thalassemia minor and her husband also has Thalassemia minor and they have juts planned a baby hoping the baby will not have major. Talassemia major is a very serious condition . I am glad you wrote a post about this. People need to be more aware about this condition.
I hope they have consulted their doctor….
Very informative post Noor. Good to know so much about Thalassemia. Yes, we can save a life by donating blood. Thanks for sharing.
Thanks for the insightful post. I only knew that people with comorbid conditions had serious illness.
Yeah, I heard about Thalassemia. Its so painful to see our near and dear ones to suffer like this
An absolutely timely and important post….the awareness is so important……Heartbreaking loss.
Thank you for stopping by
This is so very informative, Its imperative to share such information, Great Read
Your article got me thinking how important it is to go for a generic counseling in today’s world before planning for a child. This kind of awareness needs to be instilled