Thalassemia Support Program

Thalassemia

Thalassemia Major is a genetic blood disorder, where patient can not produce normal Haemoglobin. Red cells are unable to transport oxygen. This disease is more prevalent in Sindhi, Punjabi, Gujarati and Lohana caste.

In India, at every 10000 birth one child is born with Thalassemia Major. There is almost 1200 Thalassemia Major Patients in Ahmedabad and this is on the rise.

Thalassemia Major

If both the parents are Thalassemia Minor, then there are 25% chances of having a Thalassemia Major baby, 50% chances of having Thalassemia Minor kids and only 25% chances of having absolute normal child

Difficulties For Thalassemia Major Children

  • Thalassemia Major Kids are unable to produce healthy and effective Red cells. Hence they have problem of palor, weakness, growth retardation,
    bone deformities etc.
  • Thalassemia Major is almost an incurable disease.
  • For survival, they need repeated Red cells transfusion at two to three weeks interval. Hence it becomes apparent that life of these patients is
    dependant on regular Blood donors and blood donation.
  • Due to repeated transfusions, there is an iron overload in the body, which gets deposited in heart, liver and pancreas. Excess iron has to be removed
    with chelator drug which is injected under the skin or given orally. This drug is expensive and difficult to administer.
  • They are at increased risk of blood borne infections like HIV, Hepatitis B and Hepatitis C.
  • Family of Thalassemic child undergoes huge sufferings, pain and expenses.
  • It is a costly affair for a family as the monthly treatment cost Rs.10,000-12,000
  • The Thalassemic children will have to undergo blood transfusion from the time of their birth till the time they survive, thus undergoing stress of
    pain and huge financial commitment.
  • These children are not covered by any Mediclaim. Because it is an incurable, genetic, hereditary and by birth.
  • Despite all the pain and medication, only few of Thalassemia kids cross teenage in India.

Role of Prathama Blood Centre

Prathama Blood Center is committed to provide safe and quality blood to Thalassemia Major Children, totally free.

Thalassemia Adoption Program was started to provide financial help to economically compromised families.

Prathama has more than 200 Thalassemic cases that come in for blood transfusion. To provide the safest, Qualitative blood on regular basis we have made a group of specific blood donors. They are known as “Thalassemia Support Group” thereby forming Thalassemia Support Program: Prathama has identified blood donors and grouped them in groups of 6 who would regularly donate to the same thal kid. This would prevent reaction and any further complication. This program was covered by Divya Bhaskar “Lohi ni sagai”, this has motivated other donors to come forward and donate exclusively for thal children.

Adoption

Thalassemic Adoption Program

“Thalassemic Adoption Program”, an initiative of Prathama Blood Centre, a program one of its kind undertaken by any blood bank. This program initiated in the month of January, 2009 with an encouraging response from society for Thalassemic children. Prathama has more than 200 TThalassemic cases that come in for blood transfusion. To Support the families of these children Prathama has taken an initiative and launched Thalassemia Adoption Program. In order to support the families financially, emotionally, socially and morally, Prathama acts as a link and approaches individual donors and organization to fund these families by reducing their expenditure of treatment.

Objective-Thallassemia Support Group

Objective of Thalassemia Adoption Program

This program has commenced with an objective of providing safest, qualitative, sufficient blood free of cost. (Without any processing charges)

In order to keep the family going, this program aids/assists the family in continuing the treatment without any hitch, thereby allowing the child to live without any complications with respect to finance and allow smooth and continuous support, for which we are regularizing sponsorship from various sources of the society for the needy thalassemic children.

Erradication

Prathama is a “Not for Profit Organization “, and taken an initiative for eradicating “Thalassemia”, a painful disease that is spreading due to unawareness.

We find about 4% of the population in the society affected by Thallasemia minor. When 2 Thal minors marry, there are 25% chances; they give birth to a Thal major. Patients who have Thallesemia major go through the trauma not only physically, mentally, emotionally, but also, financially, wherein they are drained as the treatment is an expensive affair.

Prathama has undertaken this as a Corporate Social Responsibility to eradicate this disease which is multiplying due to unawareness in the society and introduced “THALASSEMIA ERADICATION PROGRAM”. This program enables un- married people to get themselves tested at a nominal amount of Rs 100/- and know well in advance if they carry the Thalassemia trait. This is as a precaution and not getting into wedlock with another individual carrying the Thalassemia Trait.

Also as part of this program, Prathama team would present and answer all queries related to Thalassemia and its Eradication.

I request you to join hands with our organization in a noble cause like this and help society get rid of this painful disease and make this a better place to live .I request you to give us a convenient time and date to present and share information of Thalassemia and take in pre registrations to enable us organize and implement this program successfully.

India spends nearly Rs 1000 crore per annum in the treatment of Thalassemia patients.

According to experts, the only way to prevent the occurrence of the disease is to avoid marriage between the carrier of Thalassemic minor genes. If both have genes carrying Thalassemic minor, then there is a greater chance of having babies with Thalassemic major disease.

Therefore, the experts advised that the awareness must be created amongst the masses and they must be a compulsory testing of Thalassemia test for both bride and groom before marriage, thereby avoiding the incidence of Thalassemic major disease amongst the offsprings of the couples.

Thalassemia is a genetic blood disorder. In Thalassemia, the genetic defect results in reduced rate of synthesis of one of the globin chains that make up heaemoglobin.

Reduced synthesis of one of the globin chains causes the formation of abnormal heaemoglobin molecules, and this in turn causes anaemia which is a characteristic of thalassemia.

There is no cure for thalassemia, and the best treatment available today consists of frequent blood transfusions (every two to three weeks) with iron chelation therapy administered by doctors.

Bone marrow transplants (hematopoietic stem cell transplantations) and cord blood transplantation with pre-operative myeloablation are potentially curative, though the latter requires further investigation.

In Gujarat, there are about 6,000 Thalassemic children and in Ahmedabad alone the number of cases are more than 1,000.
According to the experts, the disease has economic implication on the nation as well as psychological and social on the society. The couple having children with Thalassemia face financial problems, suffers depression and even it leads to divorce.

Donations

Sources of Financial Donation

  1. Individual
  2. Institutional
  3. Corporate
  4. Charitable Trust

All donations under “Prathama Thalassemia Initiative” are eligible for exemption under Section 80G of Income Tax Act.

Use of Donation

Prathama converts financial donation to sponsorship coupons for receiving blood components. These coupons are distributed to the Thalassemia children who are registered in our TAP.

Contribution from the Society

Thalassemia Adoption Program has been responded by all prominent Individuals, Professionals, Corporate and Charitable Trust. Till date we have received financial contribution from the above mentioned sources.

Prathama has issued free coupons for blood to the above adopted Thalassemic children .

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