Prevention-ZERO Thalassemia

We at the Thalassemia Society are committed for Prevention and Awareness drives in and around Pune. We have set a goal to achieve ZERO Thalassemia birth of new Patients in Pune by the year 2020.

As a part of this, we are planning to cover all corporates and colleges. We have conducted major awareness campaign in Infosys, Wipro, Fiat, VW, to name a few- where we have collected more than 500 samples for screening and are in process of counselling affected people with Thalassemia Trait. We are in process of similar mass awareness campaign / screening for prevention in various communities to create awareness of the disease condition .

Mission Statement

The Thalassemia Society Pune Chapter was founded by patients, parents and friends affected by Thalassemia. The foundation provides hope, comfort and encouragement to those battling this disorder. At the heart of the organization is a strong desire to help improve the quality of life for all patients with Thalassemia. We volunteer our time to organize conferences, raise funds to educate the community, ensure patients and parents know the latest in care.The foundation maintains a strong relationship with the medical community that provides diagnosis, treatment and care.

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Surendra @ +91-976-651-1371

Email Us

Important Contacts

Office Phone - +91-844-671-6162 (Open from 10am-2pm)

Blood Filters - Mrs. Naina Doshi +91-927-004-9248

Living with Thalassemia - Patient Stories

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.