Hemophilia Society Nagpur Chapter

Outreach program for Patients

 

The outreach program under the IN Country Twining program By World Hemophilia Federation in guidance with Hemophilia Federation India and KEM hospital was conducted on 8 th JUNE 2023 at Dr PunjabRao Deshmukh Medical College, Amravati By Hemophilia Society Nagpur chapter, Lata Mangeshkar Hospital in association with Indian Medical Association and IAP, Amravati and District Hospital Amravati. An informative program on Hemophilia disease was held for Hemophilia patients and their families at Skill Lab, Punjabrao Deshmukh Medical College, Amravati on Thursday dated June 8, 2023.

The program commenced with the inauguration ceremony. The dignitaries were invited on the dias and floral welcome of each guest was done by office bearers of the IMA,IAP and Dr Anju. Then the dignitaries lit the lamp to start the educational program . The chief guest in this program were Dr. Dilip Saundle, Civil Surgeon, District Hospital Amravati, Principal of Dr. Panjabrao Deshmukh Medical College Dr. A. T. Deshmukh sir. Dr. Ashwinikumar Deshmukh, President,(Indian Medical Association Amravati Branch), Dr. Kaustubh Deshmukh, President, (Indian Academy of Pediatrics Amravati Branch), Dr. Vilhekar, Senior, Paediatrician, Department of Paediatrics, Dr. Ramavatar Soni, H.O.D. Department of Pathology graced the occasion with their presence.

Dr. Anju Mehrotra Kadu, Secretary, Hemophilia Society Nagpur, Lata Mangeshkar Hospital Nagpur said that this program is organized in collaboration with World Haemophilia Federation and Hemophilia Federat1ion India to create awareness in haemophilia patients so that new patients could be diagnosed well in time and appropriate treatment can be started.

Dr.Dilip Saundle thanked the organizers for organizing this program for the patients in Hemophilia Center at Irwin Hospital, where the patients are getting free factor 8 and 9. The Program aims to make patients aware of various treatment modalities and so that they can avail facilities available in various centres.

Dr. A. T. Deshmukh in his presidential speech said that even today many people are not fully aware of hemophilia hence its important to know about it. He asserted that the establishment of a center for the treatment of hemophilia patients by the government in Panjabrao Deshmukh Vidyalaya will benefit many serious patients. Therafter Dr. Nitin Raut, Secretary, Indian Pediatric Association Amravati Branch, gave detailed information about the symptoms and prevalence of hemophilia and other blood clotting disorders. Anyone experiencing any of the bleeding symptoms were advised to consult a medical professional. Dr. Ramavatar Soni HOD Pathology gave information about the various tests for Diagnosis of such disorders. Dr. Anju Mehrotra Kadu emphasized the importance of prophylaxis in her talk so that they can live like a healthy person and damage to their joints can be prevented. Maharashtra factor is given only in case of bleeding but in some states regular prophylaxis with factor is given so this facility should also be made available to patients in Maharashtra.

Hemophilia patients need to check whether their body has developed resistance/inhibitors (inhibitor assay) against the factor, and regular inhibitor screen yesting must be done. She also informed that many new treatments are available globally and in India and gene therapy for hemophilia will soon be started in India. After that she guided the hemophilia patients on how to take proper care of their bones, joints, what to do in case of bleeding.

Dr. Naresh Tayde said that not every non-stop bleeding disease is hemophilia, but other diseases related to blood components can also show such symptoms, so 100% diagnosis should be done by genetic testing along with factor level. People think that only the mother is responsible if a child gets hemophilia, but 33% of patients said that this disease occurs suddenly and since it is a genetic disease, it is necessary to do a genetic test to prevent it from happening in our next generation. If this screening is done, a prenatal test in the first trimester of pregnancy can be used to determine whether the unborn baby has the disease or not.

After the scientific session, All patients were examined and given proper advice and guidance. Approximately 70 patients along with their families benefited from this program.

This program was moderated by Dr. Bhupesh Bhond, Secretary, Indian Medical Association Amravati Branch. This program was successfully conducted with the kind support of all the present doctors and the doctors in the Pediatric Department, Dr. Rupali, Dr. Vijay, Dr. Wait, Dr. Lokesh, and Dr. Rakesh. Progam concluded with the lunch.