Blood Donation Camp

We had our first blood donation camp for our Thalassemic babies and with the kind courtsey of Ford India , Udaipur branch we were able to motivate 35 people to donate blood. Hetal and Pooja were among the frontrunners in motivating the staff and we are sure that in time to come we will be able to collect at least 100 units of blood every month.

Recent Developments in the Project

I am really sorry that I couldn't update in time due to a hectic schedule but past 2 months we had been working hard on the project and finally came up with some good results

1. One of the biggest organization "Thallasemics India" finally accepted us as a part of them and now with their help our foundation can get the latest updates and also will be able to attend all the conferences and seminars both in India and abroad. Medicines and other equipments needed for Thallasemic babies can be acquired from them at subsidized rates.

2. One of the most ultramodern blood bank in Udaipur has now approached us for tie up with them and so fresh blood will available to the kids at subsidized cost and without any replacement.

3. One of the laboratory in udaipur has tied up with us to provide all the tests for Thallassemic babies at 50% cost.

4. In the recent meetings with parents both of our team members Pooja and Kriti discussed with the parents about the food habits in Thallassemic babies and Iron overload respectively and to my utter surprise now the team members are developing so fast that they were able to answer most of the queries of the patients themselves without me and one feels really good when the team is so devoted for the cause.

Parents Doctors meet

As already known we had a parents doctors meet yesterday and had a two hour long session where parents were asked to raise their queries and were answered by Dr Meetu ,Ms Pooja and myself. We had two lectures where I spoke to the Parents about Blood transfusion to their Kids and Pooja spoke to them about the diet pattern for the kids and guided them when and how to give chelation therapy to the kids which was followed by a long discussion. The next meeting with the parents is scheduled on June 13th Sunday.

Meeting for Parents

As we move on to the next step of our project we have invited all the parents of the children suffering from Thalassemia for a get together on May 22nd 2010 where we have called to experts to give them a lecture on the misconcepts of the disease.To my utter surprise the parents have a feeling that their child is going to die and cannot be saved from this disease and so they should emotionally separate out the child from the family. The parents after meeting us have a new ray of hope for their children and we want it to increase more and more as days pass by.........

World Thalassemia Day Celebration

Yesterday we celebrated The world Thalassemia day with the kids suffering from this disease. We invited about 60 kids and had a small picnic of 3 hours with them. They played games like pinning the elephant,Baloon breaker,musical chairs and passing the parcel. We also had a small lecture for the parents on "do's and dont's" for the kid. In the end we had refeshments and gifts for the children. It was a great success and would also like to thank the entire team of The foundation who worked so hard to make it a success.Nothing much to speak as the photographs can do it by themselves.

Monday, May 3, 2010

World Thalassemia Day

It is the "World Thalassemia Day " on May 8th Saturday and The Raven Charitable Trust is planning to celebrate this day with the kids suffering from this disease in Udaipur. The kids belong to the age group from 1-8 years and are around 150 in number. Can you all give some innovative ideas how to organize the entire programme..... games,prizes....

Sunday, April 25, 2010

Introduction to Thalassemia

The word Thalassemia is derived from Greek word "Thalassa" which means Great sea. The disease was first identified in countries around Mediterranean sea. The largst concentration is now seen in India,Pakistan,Middle East ,Greece and Italy.

It is a hereditary disorder of reduced haemoglobin synthesis and the patient develops severe anaemia in first few months of life. Less severe forms of the disease are present but the severe most form is the Major type where the child needs to be diagnosed fast and treated with blood transfusion every 15-20 days to keep him alive. the transmission of this disease is through the parents who are symptomless as they are in carrier state.

The child needs regular blood transfusions in the form of packed RBC'S and is prone to so many other diseases like HIV and Hepatitis B or what we call as transfusion risks and the biggest complication is deposition of excessive Iron in his/her body in kidneys,liver and heart and if this iron is not removed from the body the child will die of other complications. Removal of excess Iron from the body is called "Chelation" and there are a few drugs available in the market ,though costly and the kid has to take it every day till he lives or is treated for the disease.The drugs have their own complications and at time can be fatal. In normal course of disease 33% of the kids do not survive beyond the age of 10 and another 33% beyond the age of 20.

The disease is important as not only it can be cured but also it can be prevented and thus a lot of burden from the society can be taken off.

The disease can be easily diagnosed in people before marriage and if found positive(Carriers)in both partners the marriage should be avoided.In case of post marriage diagnosis the pregnant mother can go for CVS and if the baby is found to be suffering from the disease then pregnancy can be terminated on medical grounds.This is a very important aspect of the prevention which does not involve much costs as compared to giving birth to a defective child and having a moral and financial burden on the whole family. The children suffering from the disease have only one treatment option and that is to go for a Bone marrow transplant operation or a Stem cell transplant operation unfortunately it is a tedious process and needs a lot of patience and is a costly treatment but fortunately is available in India with results comparable to anywhere in the world.

The CME was very helpful in the sense that not only transplant surgeons and the hospitals agreed to give a good discount(40-50%) for the patients refereed through the foundation but also the Public cord blood bank in India (Stemcyte) agreed to provide us stem cells almost free of cost to the foundation for the needy and poor. The cost of the treatment which in actual is 10-15 lacs (1,50,0,000) INR will be further cut down by the foundation in terms of helping the family so that the baby can be cured for ever and of course I need support from all of you to make this dream of mine to come true because think of a 2 year old child having blood transfusion every 20 days and also for the family..............

Wednesday, April 21, 2010

Udaipur Doctors address Thalassemia for The Raven Foundation

Udaipur saw its first major CME on “Advances in Treatment of Thalassemia” on 18th April, arranged by the Raven Charitable Trust (RCT) and endorsed by the Indian Academy of Pediatrics (IAP). Guest speakers included Dr Rashid Merchant, who travelled from Mumbai; Dr Chirag Shah and Dr Pushkar Shrivastava from Apollo, Ahmedabad together with local speakers.

The programme opened with Dr A.P. Gupta, head of IAP, addressing the floor with a comprehensive introduction to Thalassemia; followed by leading physician, Dr Pushkar Shrivastava, from Apollo, Ahmedabad, who specifically addressed evaluation of the condition in children.

Dr Rashid Merchant of Nanavati Hospital Mumbai presented a lively paper on “Management of Iron Overload” and gave a clear message that non-chelation in transfusion is no better than murder!

Local Udaipur speakers included Dr R.L. Suman who discussed transfusions in the Thalassemia child; and Mrs Purvi Shah presented on the importance of stem cells in future curative treatment for the condition.

More than … local paediatricians attended, and after the guest speakers finished their presentations, there was a Q & A session chaired by Dr A.P. Gupta and local IAP chairman, Dr Suresh Goyal, where delegates were able to address questions to the experts.

Thalassemia is one of the conditions that The Raven Charitable Trust will be researching and treating at its new Deesha Hospital rural hospital outside Udaipur.

Founder of the RCT, Mrs Charlotte Raven had travelled from the UK to attend the CME, and also addressed delegates on the history or the Trust and her involvement in it. She had been lucky enough to leave the UK just hours before the volcanic ash cloud halted flights out of Europe for six consecutive days.

Thalassemia is a genetic disease where if the parents are carriers there are 25% chances of having an affected baby. This disease is more common in a few states of India and these small kids of 1 yr age have to undergo blood transfusions every fortnight to remain alive as their body produces wrong haemoglobin which is ineffective in carrying oxygen. BUT THE MAIN PART OF THE STORY IS THAT THE DISEASE IS CURABLE AND PREVENTABLE......... (More about the disease in next blog)
I invite all the followers of The Raven Foundation who are really interested in medical science to follow this new blog of RCT entirely dedicated to medical expertise of the foundation.

Tuesday, April 20, 2010

Welcome to our new medical website

We are just launching this site, which will be under construction this week, so ask for your patience. In the meantime, we are still operating our other site:
http://theravenfoundation.blogspot.com

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