Living with Thalassemia - Patient Stories

Jatin Sejpal - Living with thalassemia major, he now plays saviour, says early screening can prevent the disorder in newborns

Courtesy Indian Express

Jatin Sejpal

He didn’t choose to be born the way he did. Or want inheritance. His parents didn’t either. They waited to hold a healthy baby in their arms and complete their circle of life, not knowing that they carried the illness that they had unknowingly passed on to their son. And so, the one thing that 42-year-old Jatin Sejpal, who has been living with the genetic blood disorder called thalassemia major since birth, has learnt is patience. Endless hours of it. As he calms down anxious relatives of ICU patients at his coffee station on the fifth floor of Pune’s KEM Hospital, he’s a living lesson of how life can be reclaimed even when it seems to be breaking down. And he may have chosen not to have a child, but he helps other children and their parents by spreading awareness about the disease, having built an encyclopaedic knowledge through his lived experiences. “Around 10,000 children with thalassemia major are born every year in India. It affects all organs of the body. It starts with the bone marrow being unable to produce adequate haemoglobin. The liver and spleen are also under pressure and overworked. Due to repeated blood transfusions and iron overload, the thyroid, pancreas and the pituitary gland malfunction and require specific medication to treat each of them. Sometimes thalassemics experience facial bone deformities. A transfusion, while life-saving, has to be watched as excessive iron-buildup can be life-threatening, affecting major organs,” says Dr Nita Munshi, president, Thalassemia Society Pune Chapter.

Jatin Sejpal

“Nobody knew much about thalassemia when I was born in 1980. Certainly, my parents didn’t know they were carriers,” says Jatin for whom life, as he remembers as a child, was about blood transfusion every fortnight followed by iron chelation injections to rid the body of excess iron. It was at KEM Hospital that noted paediatrician Dr Anand Pandit diagnosed his condition when he turned two. Looking back, Jatin is grateful that he did not pick up any infection following his many blood transfusions but admits that arranging blood was a challenge for his parents. Each transfusion meant almost two days of rashes, fever and weakness. As a child, he required a 250 ml pouch of blood which then increased to 400 ml as he grew older. “The injections to remove excess iron were costly, each vial costing Rs 160 back then. Two vials had to be administered via an infusion pump though my father could not afford the Desferal injection. I took shots at least twice a week or so. The infusion pump helps deliver a specific and continuous amount of the medicine subcutaneously. The infusion set has to be inserted under the skin and connected to the pump and has to be given over 8-12 hours,” says Jatin.

He prefers to blur out his school and college memories as he was an outcast, without friends and left out of sports, drama competitions, picnics and excursions. “Remember I was growing up through the 80s and 90s, so the medical community was focussed on other diseases like HIV,” says Jatin, who had to face a great deal of stigma. “The social isolation hurt me more than my physical pain,” says Jatin, who took to watching television and reading, determined to equip himself with every bit of research on his condition and harness it for bettering his predicament. As he grew up, the painful injections were replaced by Kelfer capsules thrice a day to deal with his iron overload. Still, his counts outpaced him because of frequent transfusions in his early 20s when he had back-to-back surgeries. First, it was the spleen and within a month, it was his gallbladder. Then a leg fracture following a road accident. He recovered slowly as he was swamped by lethargy that left him incapable of finishing basic tasks and feeling frustrated. By 28, he developed Type 2 diabetes and an eye clot. So now even the slightest increase in iron can harm his pancreas that much quicker.

“Thalassemia Major is a big health issue even today although it is totally preventable. It is a draining cost as monthly medical expenses are easily about Rs 10,000 to Rs 15,000. Jatin’s parents were Thalassemia Minors (also known as carriers) and a simple blood test called HBA2 is enough to identify the trait. The Maharashtra government is planning to fix a rate for this test. There are tests to detect if the child has Thalassemia Major during early /pregnancy. Fetal medicine specialists take a sample from the placenta and accordingly couples are guided during their pregnancy. We are aiming for zero thalassemia births by 2025,” says Dr Munshi.

Jatin has forged through his adversities. Today he volunteers at the Thalassemia Society of Pune, where he met his wife Megha, also a thalassemic. He organises blood donation, awareness and screening drives and emerged a saviour during the pandemic, getting blood donors and arranging transfusion for himself and others despite the lockdown. So committed is Jatin to helping thalassemic patients that he devours medical literature and tells them how to manage their condition with examples from his own life. And for all the good work he does, there’s no end to the bad days. Having normalised transfusion and iron tests as his body basics, he was happy the day his daily dose of medicines came down to taking 12 tablets. But now he has to battle osteoporosis and weak veins. Yet he has no option but to be indefatigable. “There was a time when people mistook my transfusions to be dialysis sessions and thought I had kidney disease. There are still so many myths floating around. Thalassemia is 100 percent preventable by pre-marital screening or early pregnancy screening followed by marriage counselling and antenatal diagnosis. Thalassemia Majors can live normal life if they are given adequate blood transfusion and iron chelation therapy. Look at me. Thalassemia can be cured by bone marrow transplantation but requires matched siblings. There is no evidence that thalassemia trait makes carriers more susceptible to COVID-19,” says the patient who could have been a doctor.

- Jatin Sejpal (A Social Activist for Thalassemia and TSPC Member)

Priya Vaswani

Hiral Shah

Thalassemia - I don't feel like this word is a disorder to me anymore but it has turned out to be an opportunity in my life to make a difference!

Here, I am and here's my story. I was diagnosed with thalassemia major when I was of 3 months and today I am 24. This 24 years period has its own sets of ups and downs. You can call it as a rollercoaster ride which gradually I started enjoying. I was born in Kanpur, U.P, my parents didn't know anything about thalassemia then and tried there best to keep me healthy. Since Kanpur didn't have good hospital, they used to take me to SGPGI - Lucknow for blood transfusions. When I was 6 they took a decision to shift to Pune just because I should get proper education and treatment.

I have always been a jolly kid and with my parents support I was moulded into brave kid. When I was of 8, I got badly infected with pneumonia, was admitted in hospital for a couple of months, doctors were unable to find out why wasn't I responding to treatment as my condition got worsen day by day, they told my parents that they are trying their best but can't guarantee whether I would survive or not. But I am a child of my brave parents, mumma and papa gave me all strength and love to me and I recovered and was out of the ICU soon.

I completed my secondary and higher secondary education with flying colors, though I got fractures in between but I continued to study. I wanted to pursue MBBS but failed to score well in entrance so I decided to take pure sciences and did my graduation in microbiology. Currently I am pursuing post graduation in Microbiology.

I am passionate about thalassemia, as I said I take it as an opportunity. With the help of my family i have built up enough confidence that now I give speeches on thalassemia awareness and positivity in colleges, Institutes and conferences.

I am volunteering with TSPC and The Wishing Factory NGO, both these organizations are working towards wellness of thalassemics and aim to eradicate thalassemia. I believe- that life is a reflection of our thoughts, we attract what we think and believe in, hence I say let's always stay positive and be an optimistic in life, because pessimistic thoughts never work!

- Priya Vaswani (Thalassemia Major Warrior & a Social Activist for Thalassemia)

Hiral Shah

Hiral Shah

My name is Hiral Shah. I am Thalassemia major warrior since birth. I am detected with Thalassemia when I was 6 months old. That time in 1992 my parents didn't know about Thalassemia and even they can't pronounce it's name. Doctors told my parents that this child will not live longer then 7-8 years, but my parents didn't give up. They did their best & started my Treatment immediately.I have to take blood transfusion regularly 10-15 days.

When I was 6-7 years old, I got to know that I have to take blood transfusion lifetime. My school period was really great. All my teachers & my friends knew about my Disorder & they always helped me in anything I needed. I have remembered that When I was in 9-10th std I have to take Desferal Injections at home.

My mother gave me this injection at night around 10 or 11 pm and it will be finished at morning 6 or 6.30a.m. That was very difficult for me, because I have to go to school at 7.15am. Thanks to God My principal allowed me to come to school a little bit late.
In 10th std I have to take blood transfusion twice a week during Final Examination, but inspite of all this I have ave scored 75% in final exam. After that in 11th std I took Arts. I have chosen German language, because I didn't want to become Doctor or Engineer or CA. I wanted to do something different. Later I have done B.A in German language. Blood transfusion was a part of my life.

I remembered in summer we were facing very difficulty for getting blood. My mother called 15-20 people and in all this only 1 person was ready to give blood. My mother also organized 3-4 blood donation camp's so that we don't need to beg someone to give blood.

Whenever I went to K.E.M Hospital for blood transfusion, I used to talk with other Thalassemia children & their parents. My mother did their counseling also. I told all of them to go to school & educate themselves. Many of them couldn't go to school & they couldn't afford medicines we have to take.

I am very lucky & fortunate that my parents always did my Treatment & gave us all the medicine although they couldn't afford it. They managed every time somehow & gave me right treatment. My brother is also Thalassemia major warrior. Our parents raised us like a normal children, they didn't compare us between us & normal children. While I was pursuing for B.A German, I have also did Max Mueller Bhavan courses till C1 (6levels). That time I also took German language tuitions so that I can earn money and at least can bear some of the medicine cost. After finishing my M.A German I was selected in IBM Concentrix.

I was very happy that time. My parents were very proud of me, that despite of Thalassemia & all others problem I got the opportunity to work with IBM. I have worked there for 1 year & 4 months. I have to resigned because of my health. I have to do rotational shifts, that's why it affected my health badly. In January 2015 & June 2015 twice I was in ICU. In June 2015 I had very severe Pneumonia, and Doctors told my parents that I have only 72 hours. I couldn't breathe & my left lung was full of bacteria. I know that time, I can't give up. I have to get up anyhow. I want to do many good things in life. I want to spread awareness about Thalassemia, I want to fulfill my dreams. I want to live my life fullest & want to go to Germany. Thanks to God, all good Doctors & my parents I got up & recovered fast.

In 2016 I have started my own German language classes. I am taking now 8th to 12th std classes & MMB A1 tp B1 levels. I always stay positive in life. Now I am also part of the NGO The Wishing Factory.

I have 30 Goals in my life & I want to fulfill all of them. One of the Goal is that I want to create Advertisement of Thalassemia disorder & I want that some famous celebrity come forward to help us to achieve that. My another Goal in life is go to Germany. I have learned German since I was in 11th std so approximately from 10 years I am in touch with German, that's why I want to visit Germany & experience their culture. I am very thankful to Thalassemia society pune chapter who always helped us for Regular annual Tests. I am also grateful to Dr.Nita Munshi for her support.

I am grateful for Dr. Vijay Ramanan, Dr. Anil Habbu & other Doctors. I am also thankful to K.E.M Hospital staff for always helped us when we needed. I want to thank my friends & family too, because without them I couldn't reach this point in my life.