Dhanori: On March 31st 2018 MVR Welfare Foundation joined hands with "Thalassemia Society of Maharastra" in organising a free camp for patients and relatives from Pune who are suffering from Thalassemia.
Event was organised in the "Thalassemia Free Day Care" in Dhanori's Mahadev Nagar in Pune. This Day Care was recently inaugurated and donated by "Yashoda Subramanian" in memory of her Late husband Ex WO Subramanian Madathamulai. Over 300 people attended the event. Who started thronging as early as 9 AM. Speech by Dr. Vijay Ramanan leading Haematologist in India, who has cured thousands of thalassemic patients of regular blood transfusion was what patients were waiting for!
Event started by paying homage to Late WO Subramanian who recently passed away.
"There are 19 Lakh Thalassemia patients in India. BMT can only be done for few hundreds per year. When will be find cure for lakhs of people. Alternate solutions like Novel Therapy needs to be explored."
Anjali Kewal and Jatin Sejpal who benefitted from Novel therapy, shared their insight and fight with Thalassemia. In the case of Anjali it was for her daughter. Their journey which was once in despair with endless trips for blood transfusion, to now living normal life. She encouraged patients to get as much information as possible on treatments and make a decision. She also insisted to patients not to be biased by social media messages or relatives with limited knowledge. Her message was loud and clear that talk to experts and make balanced judgement and not sway by hearsay.
Jatin shared his story on how he discussed his case in train travel with Dr. Vijay Ramanan and which started a treatment which has changed his life for good! He no longer is taking blood transfusion for years! He even touched upon the nexus between blood banks and why they do not what patients to be fully cured.
Their were few other speaks who represented various welfare foundations. Trupthi Thanekar gave a short and sweet talk on social workers job in Transplant. We also had Prajakta from IndiaVocal and Make a wish Foundation.
Finally we had Dr. Vijay Ramanan share his vast knowledge and insight. How his fight against Thalassemia started. "There are 19 Lakh Thalassemia patients in India. BMT can only be done for few hundreds per year. When will be find cure for lakhs of people. Alternate solutions like Novel Therapy needs to be explored." he said. He mentioned that 50% of the blood sold is to the Thalassemia patients and that would explain why people affiliated with these blood bank would not want patients to be cured. He also mentioned that US and Europe about 1000 thalassemia patients and for them this is not a big disease to deal with. Lot of doctors who make reference to guidance given in these countries forget this. It is much bigger problem in India with 19 Lakh patients and we have to find long lasting solutions. He also mentioned that if both the parents are "Thalassemia Minor" then the child could be "Thalassemia Major". So test of partners should be done before marriage. The long lasting cure of this is ensure we do this test mandatorily before marriage and avoid kids born with this dreaded disease. He also mentioned that work on gene therapy has already started and he can see a treatment coming in in next 3-4 years. He gave a very crisp overview on the options available, and how patients should make decisions.
Free tests for patients
Anjali Diagnostic Laboratory team lead by Dr. Ketki Kelkar made it possible to conduct free tests for patients. It is by no means a simple task when the patient count is in hundreds! There were free HLA matching done and few other tests were done for the patients. These tests generally cost few thousand rupees.
As Dr. Vijay Ramanan said it may have brought curtains to this event but it is start of a very exciting journey in coming months when similar camps would be organised in other parts of Maharastra. So stay tuned.