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Thalassemia patients’ lease to life
Sakal Times | Thursday, 7 May 2015 AT 11:18 PM IST
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Faced with problems like discrimination and a high cost of treatment over a long time-frame, changes within the modern society hold promise for Thalasemmia patients in the city. Shashwat Gupta Ray reports.

Patients turn ideal partners

Pune: Refusal of marriage offers is a critical obstacle Thalassemia major patients face from society.

As a solution, Thalassemia major couples have started tying the knot amongst themselves to become each other’s social support system.

“Every year, 13,000 new Thalassemia patients are born. An average of eight to 10 per cent of the Indian population carries the disorder. Our social acceptance in society is very low. Getting marriage proposals is a major challenge,” said Jatin Sejpal, a Thalassemia major patient, who is married to another Thalassemia major patient Medha.

According to Jatin Sejpal, Thalassemia major patients become victims of society’s ignorance about the disorder.

“Every year, the number of patients is increasing. But awareness is not improving at the same rate. We are still fighting for dignity, apart from medical issues like repeated blood transfusion,” Sejpal said.

Megha Sejpal said that her growing up years were very difficult. “Earlier, we only had periodic blood transfusion to deal with the problem. Blood was not available easily. We didn’t get social support. Our parents used to be called sinners; which is why they gave birth to children having such defects,” Megha said.

While they were helpless in their childhood, now as adults they have decided to take charge of their respective lives.

“We were fully aware that families with non-thalassemic prospective brides or grooms will not enter into matrimonial relationship with us. So when I met Megha through the Thalassemia Society, Pune, I realised that we could be ideal life partners,” Jatin said. Today, after three years of marriage, the couple is happy to be with each other.

Akhil Gupta, who is married to Survi is also very happy with his married life. “We both fell in love with each other and got married. Being educated has helped us grow,” Akhil said.

There are six such Thalassemia major couples in Pune, who are enjoying the bliss of matrimony.

“It is a good development. Being patients themselves, they can understand each other better, which helps. Also, there’s more awareness in society today and newer medical therapies. These changes hold promise for them,” President of Thalassemia Society, Pune Dr Nita Munshi said.

Novel therapy to avoid blood transfusion

Pune: City-based haematologist Dr Vijay Ramanan has devised a novel therapy by which has helped a large number of Thalassemia major patients go off the trauma of blood transfusion and has helped them lead a normal life.

“Thalassemia is a blood disorder. Those who are Thalassemia major face the problem of excess discharge of iron, which gets deposited in the body, causing several health issues. One needs to get blood drained out and fresh blood supplied to regulate iron levels,” Dr Ramanan said.

In the oral therapy devised by Dr Ramanan, this iron level can be controlled and then reduced as the patient stops needing blood transfusion.

“There’s  an anti-cancer and anti-sickel drug called Hydroxyurea. I use the same drug in Thalassemia major patients. This activates a patient’s own bone marrow and manufactures fetal haemoglobin to the tune of 15 grams,” Dr Ramanan said.

Jatin Sejpal, a Thalassemia major patient who has benefited from the therapy, calls it a boon for Thalassemia patients.

“I was given this therapy and within a few months, my frequency of needing blood transfusion reduced. Now, since the last three years, I’m on oral medication and have not yet received blood,” Sejpal said.

According to president of Thalassemia Society, Pune and laboratory director Dr Nita Munshi, Dr Ramanan has been successfully using Hydroxyurea on many Thalassemia patients.

“There are mutations happening in  Thalassemia patients. This medicine works very well in certain mutations and takes the patient off blood transfusion completely,”
Dr Munshi said.

Thalassemia major patients in PMC    650
Thalassemia major patients in PCMC    400
Percentage of children among patients    70


About Thalassemia
  • Inherited blood disorder in which the body is unable to produce adequate haemoglobin
  • Haemoglobin is present in red blood cells
  • Normally, red cells survive for 120 days; in Thalassemia, red cell survival is reduced
  • Couples before marriage must get tested for Thalassemia
  • (Source: http://www.thalassemiaindia.org)

Thalassemia symptoms
  • Bone deformities in the face
  • Fatigue
  • Growth failure
  • Shortness of breath
  • Yellow skin (jaundice)
  • Severe anaemia
  • (Source: US National
  • Library of Medicine)

 
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Comments
Pravin Prajapati - Sunday, 31 July 2016 AT 01:34 AM IST
Vrutanshi and Aayush Prajapati, my both child is now off blood transfusion from last 395 days. Both child have thalassemia major. It's can happen with novel therapy from Dr. Vijay Ramanan from Pune.
 
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