Number of Participants: 35
The Haemophilia Training and Awareness Programme conducted by the Haemophilia Day Care Centre (HDCC) under the Head Supervision of Dr. Naresh Gupta, Director Professor, Dept. of Medicine, Maulana Azad Medical College(MAMC) and Associated Lok Nayak Hospital, New Delhi on 16th July, 2013 was a very successful event in reaching out the haemophilic patients and educating them about their clinical condition and managing the disease so as to live a normal quality of life. In this programme an assessment test system was also introduced to examine the efficiency of the training programme.
Dr. Naresh Gupta welcomed the patients and their relatives in the HATS programme. There after pre-assessment test sheets were handed over to individual patients before initiating the training programme. Initially, it was decided that every participant shall be asked to take up the test, however due to illiteracy and lack of subject knowledge, only individual patients with haemophilia took the test with their relatives.
Dr. Sunita Aggarwal, Associate Professor, Dept. of Medicine, MAMC, New Delhi delivered an educational lecture on the clinical overview of haemophilia in population. A brief knowledge upon haemophilia, its demographic data and prevalence rate, inheritance medium, pathophysiology, clinical severity, clinical manifestations (i.e. musculoskeletal bleeds, hemophilic arthropathy, hemorrhages and intra-cranial bleeds), disease burden, laboratory features, carrier detection and genetic counseling along with prenatal diagnosis.
Dr. Sartaj Ali, Medical Officer, Lok Nayak Hospital, New Delhi educated the patients on immediate treatment of haemophilia. In spite of following a lecture mediated approach, direct face-to-face interaction and questioning session was conducted. The training session included various aspects of haemophilia such as difference between haemophilia A & B, genetic idea about carrier mother, living life with haemophilia, managing the disease, the various severities, reporting and consulting the doctor, consequences of repeated bleeds in the joints and musculo-skeletal status, managing immediate bleeds (intra-cranial, GI bleeds), using crunches and crepe bandage for the bleed area, application of ice-packing therapy, advantages of physiotherapy, supportive sports, precautions and contra-indicated medications.
Patient/Audience Queries:
- The patient reported reduction in knee ROM, due to repeated bleeds.Re: The patient was asked to report HDCC, so that comprehensive care could be provided , with consultation upon with physiotherapist and orthopedics specialists.
- I am suffering from haemophilia. Can this be cured?
Re: At present there is no more for this disesase, however the patient can lead a normal life with prophylactic therapy, exercise and some precautions.
- The subject requested to conduct all test pertaining to haemophilia diagnosis under one roof, amongst which X-ray was one of them.
Re: The requirement of arranging all haemophilia treatment and diagnosis tests under one roof has been already predicted in the past, amongst which many advancements have also been made and many more are queried under process. But, equipments such as X-rays are restricted to special wards due to radiation issues, that thus cannot be installed just anywhere.
- A parent of 2years old child with 2% FVIII Factor, questioned on what intervals should he report to the centre?
Re: A regularized reporting should be followed with the centre, to undergo treatment and keep updated about the alternative treatment therapies.
- Do we require to keep a photo copy of the old prescription cards prior to submission at HDCC.
Re: Not required, as all the cards are been safely stored under record keeping, to maintain the previous treatment history and update the patient’s database, which can also been retrieved whenever required.
- An non-delhi resident, who attended the meet needs factor infusion on a regular basis. It was demanded that factors could be availed to him in bulk.
Re: The request cannot be undertaken, and the subject has to seek a centre near to his hometown or can consult with HDCC whenever required.
- Subject reported increase in heart beat rate post bleed events. Is this a problem?
Re: No. Not related to haemophilia.
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