Little Anthony died at age 7 only because his mother could not find a matching donor to save his life. The mother’s unstoppable efforts to enroll donors for Anthony lead to the formation of the well known Donor Registry of England known as the Anthony Nolan Trust.
Rashmi is a Thalassaemia Major. She needs lifelong blood transfusions – on an average every 15 days Her life is one of great challenge
Shivendra suffers from Aplastic Anaemia. His blood cells get destroyed His chances of survival are bleak
Gaurav has Acute Myeloid Leukemia His Leukemic cells do not allow production of normal blood cells His days are numbered
Rashmi, Gaurav, Shivendra and many many others have only one hope - A Stem Cell Transplant From a Stem Cell Donor
What are their chances of finding a stem cell donor? There was no functional Stem Cell Registry in India till now Very little
How do we build a Stem Cell Registry in India? By enrolling oneself on the Registry By taking responsibility. By understanding that you can make a difference .
How does one enroll oneself on the Registry? By realizing that you can be a life giver By reading the Questionnaire. By understanding the risks involved. By giving a blood sample
What happens to your blood sample? You will be called if your HLA matches that of the patient Your HLA (Human Leukocyte Antigen) factors are typed. The factors are listed on the Registry. The Registry will be integrated with Global Registries soon.
How do you donate your stem cells? In most cases stem cells will be taken from the blood stream Previously it was taken from the Bone Marrow (usually the Hip Bone). BUT NOW From peripheral blood just like a blood donation i.e. the blood stream in the body
How do you donate stem cells from Peripheral Blood? This is the same procedure as in the case of Platelet Donation (its easy..) The donor is given Growth Factor injections for 4-5 days. Stem cells are extracted by ‘apheresis’. The apheresis procedure can take 3-4 hours
What are the chances of your HLA matching with that of the patient? A very large Registry is, therefore, the need of the hour 1 in 4 : if the patient is a sibling 1 in 20,000 : if the patient is unrelated
International Marrow Donor Registries <ul><li>Worldwide >14,000,000 donors </li></ul><ul><li>USA >8,000,000 donors </li></ul><ul><li>Donors of </li></ul><ul><li>Indian origin in </li></ul><ul><li>Foreign registries <30,000 ???? </li></ul><ul><li>Extreme paucity of donors of Indian origin in established western registries </li></ul><ul><li> </li></ul>
Bone Marrow Donors Worldwide 44 countries September 2010 14,000,000 Donors 64 Registries BMDW France Greffe de Moelle 183,454 Austrian Bone Marrow Donors 60,860 National Marrow Donor Program(USA) 8,000,000 Anthony Nolan Research Center(UK) 411,912 Australian Bone Marrow Donor Registry 182,367 German Registry of Bone Marrow Donors 3,939,538 Marrow Donor Registry (India) 6,500
Who all Can Register <ul><li>All individuals ranging from the age of 18 to 50 years. </li></ul><ul><li>Males and Females. </li></ul><ul><li>Should not have any major illness related to heart and blood. </li></ul><ul><li>Minor factors like low Hb, fever, medication, minor operations don’t matter. </li></ul><ul><li>Individual should have the constant urge to save lives. </li></ul>
Let’s Build an Indian Registry Enroll ourselves Show that we care Make a difference Give life to someone
What after I register? <ul><li>Registration includes the filling of a form and a small blood sample collection. </li></ul><ul><li>The blood will be HLA typed and kept in our confidential database. </li></ul><ul><li>It will be constantly checked to see it matches any patient. </li></ul><ul><li>Only if it matches you will be called for a Stem cell donation. It does not mean that everybody will be called for a donation. Very few will have the privilege to donate once in his lifetime. </li></ul>
Please Register and Save Lives <ul><li>All you have to do is </li></ul><ul><li>Fill the Registration Form </li></ul><ul><li>Give your blood sample </li></ul><ul><li> THAT’S IT. </li></ul>
How important is your Commitment ? <ul><li>Once Registered the donor has the full right to back out anytime he wants. It would be nice if he informs it to us. </li></ul><ul><li>If a donor is chosen as a match for a dying patient, he is the only one who can save his life then. </li></ul><ul><li>Finding a match itself is difficult, but if a matched donor backs out, the hopes of the patient and relatives is shattered. </li></ul><ul><li>Hence register with a long-term commitment. </li></ul>
Let’s build the MDRI It’s a challenge to India It’s the only hope for many Indians. It’s a way of showing that we care. Rashmi, Shivendra and Gaurav are waiting for it.