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  • Remembering Late Minu Methalia

  • ZERO THALASSEMIA

 

Project:           Zero Thalassemia Mumbai

Thalassemia major is a life threatening genetic blood disorder, that requires children to undergo blood transfusion from the age of 2.
There is little awareness on what is thalassemia in society and the trauma that the children and the families face.
The Project involves spreading awareness on the hazards of Thalassemia, and why and how it can be prevented from affecting individuals.
Our Scoreboard:

  • Project initiated September 2009
  • Over 40000 Thalassemia Tests conducted
  • Identified and counseled over 1200 Thalassemia minors(carriers)
  • Over 1200 Class lectures given at Colleges to over 60,000 students

ADVOCACY
The Project has the wjole hearted support of a 78 year young lady, Smt Jasmine Majethia, who spearheads our focus on  :

  • getting the Gynecologists’ Associations support the Thalassemia Test, as one of the ‘ante-natal’ tests in the first trimester
  • getting the Municipal Hospitals to make this ‘ante-natal’ test as a protocol test
  • Government making tests mandatory at the time of registration of marriage
  • Getting Managements and Trusts of Colleges to pro-actively  support a thalassemia awareness Campaign for its students.

The first success in this has been with The Shree Vile Parle Kelavani Mandal (SVKM) which runs the SVKM Group of Colleges including like Mithibai College, NM College, NMIMS etc have decided that from 2016 onwards all students leaving their Institutions should be aware of what is Thalassemia and take a Thalassemia Screening Test.

We are indeed proud to be associated with them on this Project.   

We are thankful for the support of Padmashri Pankaj Udhas, President of Parents Association Thalassemic Unit Trust (PATUT) to achieve ZERO THALASSEMIA MUMBAI goal.

WHAT IS THALASSEMIA

Thalassemia major is a life threatening genetic blood disorder, that requires children to undergo blood transfusion from the age of 2. The children and the family go through unprecedented difficulties.
To survive thalassemia majors  :

  • need blood transfusions for life every 15-30 days
  • management costs are over Rs.15,000 per month
  • most are pricked over 250 times every year with needles in the body for over 1000 hrs every year

Besides this they are continuously exposed to Disorders of heart, liver, spleen and diseases like diabetes, osteoporosis, HIV, Hepatitis.

Did you know that 1 in 30 HEALTHY  Indians can have a  children who are thalassemia majors? They themselves are healthy but are  “carriers”  of thalassemia. They are called thalassemia minors. You could be one of them ! Surprised !

Only a specific blood test can identify whether you are a ‘carrier’.

A Thalassemia major child is born ONLY and ONLY if BOTH the partners are carriers. If just one partner is a ‘carrier’, then the child can NEVER be a THALASSEMIA MAJOR!

Amitabh Bachchan is a carrier. Luckily his wife, Jaya, was not a carrier. His children could therefore never be born thalassemia majors.

Spreading awareness on hazards of thalassemia, and the need to do a test, just once in your lifetime is what we do amongst the student.

Just 1800 Thalassemia children in Mumbai consume almost 12 percent of Mumbai’s Voluntary Blood collection.

PREVENTION IS THEREFORE A NECESSITY, NOT A CHOICE.