Transcript

Trinayani

Hello and Namaskar!

Welcome to yet another episode of Trinayani’s podcast.

I am Aastha Shah, an intern at NGO Trinayani and with me, I have Miss Ritika Sahni, the Founder-Trustee of Trinayani and we are glad to host Sangeeta Wadhwa, today, for our podcast.

Sangeeta Wadhwa is a psychologist, counselor, motivational speaker, anchor and like that wasn't nearly enough, also an event manager.

She lives with thalassemia and is an advisor to thalassemia patients and their parents which includes managing thalassemia in multiple cities for the past twenty-five years.

Thank you so much Sangeeta Ji for your time today.

Sangeeta Wadhwa

Namaskar, first of all, like to thank you Trinayani, to you for giving me this opportunity and I'm really feeling great and because being a thalassemic I feel I'm complete because being with the thalassemia, it's a, it’s a lots of challenge.

But in spite of challenges I learned a lot with my parents, my doctors, with my mentor and the my parents who have always looking forward to me and saying this, “no you have to fight this battle alone and face the society's issues.

Trinayani

Thank you, Sangeeta.

In fact, that's why we wanted to have you on board because I think all our stories need to be heard and through your story, we would like people to know more not just about thalassemia, but our very first question that Aastha has framed for you is about…Aastha? Um, this is a more general question before we actually delve into thalassemia and what your life has been with it.

So can I request you to first differentiate between the 3 types of blood disorders: namely hemophilia, thalassemia and sickle cell disease, sickle cell anemia, my bad, which are all actually recognized as disabilities under the Rights for Persons with disabilities Act 2016?

Sangeeta Wadhwa

So, like for, these all the genetic, inherent disorders.

Like a same, in thalassemia, we reduce the hemoglobin and we require the frequent transfusions and like same into the sickle cell anemia also.

But in Hemophilia, it is a bleeding disorder in which blood does not clot properly. So these are the 3 different genetic disorder which is now under into the Disability Act.

Trinayani

So Sangeeta, now we come directly to your journey, when were you diagnosed with thalassemia and since then how have you been managing it?

Sangeeta Wadhwa

When I was 5 years old, my thalassemia is detected.

Doctor told me she’s not suffering from the jaundice and she’s not suffering from this com…simple anemia which is required iron deficiency or B12.

She is suffering from thalassemia after doing my parents' thalassemia screening test.

So, first question my dad asked to doctor “because my daughter is not well so why are you doing test to me?”

So, he said, “no because it's a genetic disorder so we need to test both the parents.”

So, after that he comes and he said, “her life will be very short”, so my parents was into the trauma and like she was facing psychological issues and like many things, uh, I mean, it is very difficult for them to understand and face that.

Trinayani

Come to terms, yeah, to come to terms.

Sangeeta Wadhwa

Yeah, the terms and that particular situation and because that time in 70s nobody knows about thalassemia.

So thalassemia, it’s for the, it’s a new disease, like a cancer for them.

So, like after, like, they went to some babas (priests), they went to the, all to doctors but nobody is, like, treating for me this and everybody saying, “no no, there is no treatment for thalassemia and they will die soon.”

So, but uh because my parents are educated, my dad was a government officer and my mom is a teacher, so, she did all my youth, like my cousins they do and encouraged them to do the thalassemia screening test and because ah the bad thing is when my thalassemia is detected when my mother was a pregnant and that time test was not available.

So, by bad luck, my sister was also a thalassemic major and like she's ah like ah for me, I detected as a thalassemia in age of 5, but she is like from when she born and after soon we come to know that she required the same treatment which I'm getting.

So the burden of 2 patients at the home.

It is very difficult for, for them to face all the situation but still they are like encouraging me and they motivate me every day so I'm very thankful to my parents because they decided to give me the blood transfusion and they don't like, because I, being a counselor, I'm facing this with many parents are not ready to give the blood transfusion currently and they said, “no, if they pass away, let it be”.

Trinayani

So no, I, let me, let me ask you this question, Sangeeta, because the idea of the podcast is to break down this whole information for our audience.

So, you are saying that you were diagnosed with thalassemia and then you talked about blood transfusion, so, could you tell us that what is the frequency of blood transfusion and is this something that you have to live with all your life, so that people are aware of the condition in a much more deeper manner?

Sangeeta Wadhwa

Yeah, because thalassemia, there is a 2 types of thalassemia.

It's a major and minor.

So minor does not require any thalassemi…uh blood transfusion, but in major because our hemoglobin levels get down and our RBC is not generating the new cells, so that's why we require frequently blood transfusions.

So, for me, I'm taking blood transfusion at every 15 days.

So, for living also we require the blood transfusion.

It's like a petrol to the car.

So, if I'm not getting the transfusion, so maybe I can't live this life normally.

So I'm dependent on other's blood basically into the simpler word.

Trinayani

So, when you go for these frequent blood transfusion, Sangeeta, is it something you do, you go to the hospital to do it?

Sangeeta Wadhwa

Uh, yeah, yeah, because it's a proper admission treatment.

Uh we have to go to the hospital.

We have to admit for the day because as a daycare procedure, because we require every 15 days like a kidney dialysis type.

So, we go for the transfusion.

Will go, give the samples and they give the blood to us and after 8 hours, so we discharge for this because previously when I was in my age of 5 or 6 that time it’s required two days admission but slowly and gradually many people efforts for this, for the daycare system only.

So now we don't require to stay over it.

But yes, into rural development area or many other hospitals do this the same old procedure.

But in our day care center, we go in the morning and will come by evening.

Trinayani

So, by the very nature of the condition, where you have to go to the hospital every 15 days, are there any other challenges? Have you, you know, is there any other side effects, any other, have you or people you know and you advise, contracted any other thing just because of this blood transfusion that happens, is that a area of concern?

Sangeeta Wadhwa

Yeah, yeah, yeah, yes, because after transfusion we faced many side effects like chills, fever, headache and also because of infected blood.

We also chance to have a infections like HIV, Hepatitis C and many other infections is also there.

So it is life threatening also.

So for that actually we required a good quality of blood, screening of good donors.

And because nowadays many metropolitan cities, you know, big only having a good quality of testing bloods are available.

Like net testing, ELISA Method 6, 4th Generation ELISA Method, LEPO reduced blood is also there.

So, after that we are not getting so much of reaction.

But still, it's always be a chance to infected like ah life threatening HIV and Hepatitis C as I mentioned.

So for that we require the good quality of blood as well.

So, this is this thing.

It's like fear of death, no?

When I was a child and also being a counselor, I am still facing this problem like, patient who is dependent on blood having ah some like internally difficulty to face that, “if I'm having, getting, so something will happen to me, and all fear of death is also there.”

So, this is very challenging for them to face all the, every such transfusion, because one of my friend last time said, “I am going for my transfusion, I don't know I'll come back or not.” So like, I said, I'm also going for every 15 days, don't worry not…nothing bad will happen”, so he said, “no, no no because when, because we are googling it. We are knowing and it…so like, in, they feel anything bad may happen and all such things are there. But still, we have to face.

Trinayani

Definitely, I agree.

I agree with what all you said.

I mean the fear is always going to be there, unless and until we don't kind of ensure that everyone has knowledge about it to the extent we'd like to, the fear is always going to be there.

Yeah.

Sangeeta Wadhwa

Sorry to interrupt you, actually I forgot to mention one more thing, because ma’am asked me the transfusion infection also because due to the frequent transfusions, we are generating the more iron into the body and the excessive iron actually damages our organs also.

It's maybe a cause for heart failure, liver damage, every endocrine issues.

So many patients are not getting proper chelation and proper treatment so they are not into their adolescence age and they don't face, like a normal, like ah, they like a skel…scanty faces and all because iron is also damaging their body very badly.

Trinayani

Correct, so you know, Aastha, what about her NGO? You wrote something… Yeah, steering a little towards your NGO and your work, your NGO, it’s called The Youth Thalassemia Alliance (YTA).

So does that mean, would we be right in presuming that you have a lot of young people helping you to further the cause of awareness?

Sangeeta Wadhwa

Yes, towards the awareness, towards to the management on thalassemia and actually after my sister I found this NGO.

So my NGO aim is Face, Fight and Finish thalassemia.

So first we need to face the problem, accept that we are thalassemic and face the all the challenge, fight for the rights and then we aware to the youth to finish the thalassemia.

This is the main motto of our NGO.

So I want to all youth to join us and do promote our NGO’s main aim to face, fight, finish Thalassemia.

Trinayani

So, how would you, now that's very interesting, Sangeeta, so, Face, Fight and Finish, will you tell us, or tell our audience, give us very, in brief, how do you face? How do you fight and how do you finish?

Sangeeta Wadhwa

So for face, for the patients, we have to accept first that we are a thalassemic.

We live this life with normally, so we need to fights for the rights, for the patient's rights, like, for one example: The quality of blood we require, the quality of treatment we require, the education and jobs, everything which we require, we need to fight for this; and finish for to youth and to the nation because I wanted to see this nation zero thalassemia.

So, for that I need to, I request to, all government and the other bodies to do the mandatory test for thalassemia screening HBA(2), it’s a electro-process test.

It's a very simple test and it's a mandatory to the all, to gynac, to the do the thalassemia test for the pregnant ladies.

So at least we can see our nation zero thalassemia, like Cyprus.

So, this is the main objective of this work because for this actually we need to united and we do this way into the very strongly and togetherness is also required.

But, maybe, every NGO is doing their work in their terms but still we are, don't know about thalassemia.

Still many people are showing me the blank faces when I'm saying thalassemia.

So, for me, it is very shocking in 70s and in this era is that the same condition is there.

So, it is very bad because still psychosocial issues are there.

Financially, burden is there for everyone, for the patient and the family.

So, I want to be aware, all to the nation.

Trinayani

Absolutely, so, it was very interesting.

So, you are saying that Cyprus as a country is free of thalassemia, is that the case?

Sangeeta Wadhwa

Yes, yes.

Trinayani

Okay, and tell me one thing, ah Sangeeta, the, you talked about financial burden.

So how much does a transfusion normally cost for a, for a patient?

Sangeeta Wadhwa

See, in ah like, in SBTC actually patients are getting blood transfusion free of cost, but maybe some testings are not available, so patients are going into the private hospital.

So in private hospital, blood is free but the bed charges and everything is there. So its costs around four thousand or five thousand for the per unit.

So per transfusion cost around ten thousand for the patients who are going to the private hospital because SBTC did the mandatory, the blood transfusion is free but bed charges, filter charges, nursing charges. Everything is there.

Trinayani

Could you elaborate what you mean by SB…?

Sangeeta Wadhwa

S…SBTC (State Blood Transfusion Council)

Trinayani

Okay, and which is there in every state, in every capital of the state?

Okay, so they they give you blood for free, but you have to pay for the admission and bed charges.

Got it.

So that's the money that one has to have at, private hospital.

Got it.

Sangeeta Wadhwa

To the private hospital, not to the government. Government, everything is free.

Trinayani

So tell me this one thing, Sangeeta ji, when you're talking about, you know, you talked about societal challenges, attitudinal challenges, so, in, in your entire work, of working, your, on a personal capacity, you are advising people with thalassemia, um, what are the kind of challenges you see, let's say young people or people with thalassemia face ah in, in employment, places where they are already employed?

Are there challenges that they face that we can speak about here, so that people who are listening to us would be sensitized and do something about it?

Sangeeta Wadhwa

Yeah, but we still…

Suppose if I'm going for a job on to corporate sector, if I’m say I'm a thalassemia, so they said okay, the thalassemia, it’s a genetic disorder, maybe they heard and okay “you won’t be able to do anything”, so they don’t take that person.

So, this is the main, major challenges there.

So, the patient in my session, they always ask me the simple question “ma’am, should I disclose at my workplace whether I am living with thalassemia?”

Because the main…so what I’ll say first you prove yourself, and, and first you accept that you are a thalassemic.

Because they are saying, patients are saying, like there is a very simple common language in our thalassemia world, that is, “thalassemia has ruined my life”.

Like for example, for, because of thalassemia I'm not getting married, I'm not getting good jobs like many many rejections are there.

So some are easily acceptable and some are not.

Because everybody is not same.

some are sensitive some are, like um, not sensitive.

Some are practical, some are not.

So it is different era and some patients are actually not, uh, taking proper treatment.

So, their body is not giving support to ah work like ah um, non, non-thal people do.

I don't mention that ‘normal’ and ‘thalassemic', I said ‘non-thal’ doing is.

So these are the challenges always there.

So, I tried to motivate to all the patients.

At first you accept that you're thalassemic and you are a normal.

You don’t, you only required RBCs and whatever the society is saying you, just prove yourself, be normal and then slowly and gradually everybody loves you and accept you.

But still rejections are there.

Still ah, people are saying sympathy. Not empathy. These are still eras and mental blocks are there in society.

Trinayani

I think that's there…ah um, Sangeeta, also because, it is also, uh, which is something that you're doing, advocacy, it is very important for us to share stories.

It's very important for us to grab every opportunity that we have to let people know that whether it is thalassemia or hemophilia or sickle cell anemia, all these blood disorders are invisible and that by itself is a disadvantage where you're not you, you don't look ah ah disabled and therefore they, they have these questions.

And somebody who's absolutely not aware of thalassemia as you, as you said, all it requires is a a a a transfusion and it has nothing to do with my capability or my capacity to do work.

So, this sensitization has to come about.

But you mentioned marriage and I wanted to ask you this, that what would be your suggestion to um, you know, if there are 2 people, the boy and the girl, if they are thalassemic, what, what is the equation? What do you suggest about marriage as far as they're concerned, supposing they want to get married?

Sangeeta Wadhwa

So, first we do the thalassemia status, thalassemia screening test.

If mother is minor and father is minor, so in every pregnancy, 25 percentage chance to getting a uh kid of thalassemic major, who required the frequent transfusion.

We don't want it to uh uh like uh thalassemia-thalassemia parent get married, so because this 25 percent chances is always there.

So, I don’t…we don't want that.

So we advice to not to get married with the, if you both are thalassemic minor.

So, if one partner is minor and one is a normal, then it is fine. And, normal like non thal.

And both are minor so it is always risk there.

Even if the kid born is thalassemia minor and not major, the trait remains in the generation and you are spreading it.

Trinayani

I've got it

Got it

So that means ah the major advice to everybody who's listening to us is that irrespective of anything, if you decide, anybody anybody anywhere, if you decide to get married,

you owe it to yourself and to your future generation, if at all, to know if both of you are thalassemic free or not.

So and if you are thalassemic minor, then you ought to know that there is a 25% chance that the person, child could have thalassemia major or even thalassemia minor which would require transfusion.

Um, Sangeeta if there is anything that we have not asked you ah please feel free to let us know.

Of course, I…we would love to know if there is anything particular that has happened in the field of advocacy as far as government is concerned or where do you see YTA, actually the future of YTA in the country with the work that you are doing?

Sangeeta Wadhwa

Yeah, because my dream is to like uh, because for thalassemics, like, you should come forward and do the volunteering blood donate because many youth is still hesitating to donate the blood.

So, I just wanted to convey my message to please donate the blood because all thalassemic and sickle cells and who require the bloods are dependent to you so please come forward and donate the blood and secondly to the youth, I request please know your thalassemia status first before marriage and to all the gynac I request, do the mandatory test for all the pregnant ladies for thalassemia status and still we are not getting proper medicine free of cost from the government.

And still, we are facing lots of issues into the jobs and everything.

So maybe ah slowly and gradually it's improved, but, whatever my dream and my thing is if we cannot unite it, so it will not happen.

So I request to all, to NGO from the India, just please be united and because we need to see our nation zero thalassemia.

So, we are blaming to the system and all but first we, charity begins at home.

So just available, I'm doing traveling so I'll talk to the person driving the rickshaw also, that ‘you know what is thalassemia?’ so that way, we are doing, so I just want to, youth should be aware about thalassemia and government know the seriousness about the thalassemia.

Trinayani

Thank you so much Sangeeta.

One last thing, because you mentioned blood donation, now if I have to donate blood, how do I go about it?

Sangeeta Wadhwa

You can walk down to any nearest your blood banks, and like for me like many donors are ah my own donor so they can ask me ‘Sangeeta wherever your transfusion?’, so they can come down to my hospital and they can donate the blood.

And nowadays ahh like blood banks are like that if you 2-3 donors are there in your society, we come with the van also and will and we take the donations also.

So it’s like, for after Covid I lost many of friends because due to lack of blood.

So, after that many hospitals, even government hospitals, they arranged for the vanity vans for the blood drives also.

So it is very easy method.

It’s takes only half an hour so that's my request to donate early, personally.

Trinayani

It is such a simple request, but as you rightfully said, there is a fear, I think, among people that if we donate blood we will be weak, but actually it’s the opposite.

So, I think, it’s very important, this message that comes from Sangeeta Wadhwa who herself is thalassemic major, goes for transfusion every 15 days and there are millions of our friends with thalassemia in our country, many of whom we lost during covid because of the lack of blood, and I think that should not happen.

For all the, all the people in our country who are not ah who are fortunate to not have thalassemia but they should use that fortune and that privilege to better the lives of people who have thalassemia by a simple act of donating blood.

So, this one message that can go to everybody who's listening, ah go ahead, and collect your friends so that a van can come to you to donate, to take your blood in the comforts of your home or you just walk into a blood donation camp and donate blood.

Thank you so much Sangeeta on behalf of Aastha and me for this ah of your, your time.

We wish you all the very best.

As far as Trinayani is concerned, you know that, um, we are always there for any kind of a support that we can give towards not only creating awareness but doing whatever we can if given the right information to further the cause of a healthy life for all our friends with thalassemia.

Thank you so much.

Sangeeta Wadhwa

Thank you, thank you.

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