Budd Chiari Syndrome. Support Group Meet on 18th October 2014 at the Hall of Harmony, Nehru Centre. 

Dr. Abhay Bhave, Dr. Shaji Marar and Dr. Varun Sharma, Dr. Aabha Nagral  and Dr. Sanjay Nagral detailed the disease Budd Chiari Syndrome.

Trustees Dr. Rashmi Gapchup, Dr. Armaity Amin, Mr. Vilas Unawane and Ms. Alpa Sheth were also present to give full support to the 6th Initiative of CLF.

Patients had an opportunity to get first hand information on the causes, effects and management of the disease. The audience consisted of patients with Budd Chiari syndrome who were on either anti-coagulation alone, had undergone stenting or angioplasty of the hepatic veins and also those who had successful liver transplants. Doctors including PG students in Pediatrics and Gastroenterology also attended the meeting. The need for early diagnosis, treatment and follow up was emphasized. Parents of children who had overcome the disease, and were leading a normal life, shared their experiences which inspired other parents who were apprehensive. 

Dr. Abhay Bhave -Hematologist gave a detailed explanation on how to manage anticoagulation (warfarin) with its dos and donts including the timing of the drug and diet and its effect on the liver. He discussed the INR monitoring machine with only a drop of blood could measure INR without the need for a formal blood collection
Role of newer anticoagulant drugs was discussed. 

Dr. Varun Sharma (Pediatrician) gave an insight on how it is managed for pediatric patients.
Emphasis was to ensure blood tests are taken regularly to check the result INR – International Normalized Ratio as monitoring of the INR is essential because too high an INR puts an individual at risk for bleeding and too low an INR at risk for clotting.

Dr. Aabha Nagral (Hepatologist) explained that early diagnosis was important at the right time for Budd Chiari Syndrome to achieve long term success and that the disease could afflict an infant or a 70 year old. The causes of Budd Chiari were discussed along with various treatment options including anticoagulation, stenting, shunt surgery and liver transplantation.  

Dr. Shaji Marar (Interventional Radiologist) related anecdotes on the successful insertion of stents in children. He also explained the limitations of the procedure including stent blockage. 

In an interactive session with the patients and their caregivers, questions on a wide variety of issues relating to the management of Budd Chiari syndrome were discussed. A suggestion was made to inform and encourage all Blood Collection centers and technicians to ensure they use pediatric size vials and create awareness among the medical fraternity to insist on the same to be used across all centers and laboratories to cut down on the quantity of blood collected

Another option would be to use the special blood test equipment, which with just a prick on the finger, and a dot of blood on the testing strip. This would be painless and convenient and  could be encouraged for use on children as they needed life long monitoring of INR. Of course this meant an investment on the equipment but could be used lifelong.  
Questions were raised on the costs and management of Budd Chiari, the panel encouraged the parents and patients to collectively campaign and get the government’s attention to the include the expenses on hematology expenses under exemption of the Income Tax Act

All the specialists dwelled on the emotional support required at all times for both the parents and patients as it was psychologically and financially a strain.

The Press interviewed parents and patients and the need for determining the prevalence of the disease in India was emphasized. 

The meeting was well received and all thanked CLF for the initiative and pressed for the need for such regular meetings in the future.  


Press Coverage

Hindustan Times


CLF Intro movie

Financial Aid Offered by Trusts

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