Blood Donation Camp

Today we had a blood donation camp in association with young energetic chaps from the group CYCLOTANE. A unique and a good concept by them towards green world. The group came forward and donated blood for thalassemics.There were 20 donations and the team has come forward to help these children in any form they can. I as the managing trustee welcome all the team of CYCLOTANE to our family and hope that as the family grows we will be able to do more for these unfortunate children and their families.I heartily thank all the team members of CYCLOTANE for their nobel thoughts.

Blood Donation Camp

Yesterday we conducted a massive blood donation camp at Janardhan Rai Rajasthan Vidhyapeeth University Dabok campus and to our utmost surprise there was a massive turnout of the students for blood donation. We expected about 50 students to come forward but there were 132 of them and majority of girls but unfortunately many of them were refused as their haemoglobin levels were low. The students were not only from BPT college but also from Homeopathic college , BEd college and to my surprise two students who just completed 18 years and are studying in 12th Std of a near by school came forward and donated blood. I too donated blood in memory of Late Archit Verdia. I am Thankful to my team Hetal Amin,Pooja, Manoj and the entire faculty at University who came forward for the Nobel cause of Thalassemia and donated blood and motivated others to do the same. In the end we had 72 donations.
Thanks to all of you who came forward and also to those who didn't come forward but then they motivated others to do so..............

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.

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.

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.

Subscribe to: Posts (Atom)