HAEMOPHILIA AWARENESS AND TRAINING PROGRAMME HATS LEVEL IX- For Patients & Families,Conducted on: 30th September, 2013

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Number of Participants: 35

The Haemophilia Training and Awareness Programme was 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 30th September, 2013. The event was successful in reaching out new patients of Haemophilia who had previously not attended any HATS meeting and educating them about their clinical condition.

Dr. A. K. Mittal, Chief Medical Officer (SAG) , LN Hospital welcomed  the patients and their relatives with a warm speech attending in HATS programme.  The welcome speech was followed by a short lecture by Dr. Sunita Aggarwal, Associate Professor, Dept. of Medicine, MAMC, New Delhi on “Precaution in Haemophilia”. The lecture was descriptive and highlighted the key precution needed to be excercised by every Haemophilic patient. Precautions such as restricted use of NSAIDS, vaccination, participation in safe sports such as cycling, jogging, swimming etc. were advised to the patient and relatives. Also information on prenatal diagnosis was shared and an urge to maintain transparency in future familial relations pertaining to such genetic disorders so as to avoid conflicts.  Home therapy with PRICE was advised to all patients post any injury, to minimize the magnitude of complication dealt when the patient reports the centre. A list of the five mandatory activities described below as shown on the slide.

  1. Get an annual comprehensive check-up at a hemophilia treatment centre.
  2. Get vaccinated – Hepatitis A and B are preventable.
  3. Treat bleeds early and adequately.
  4. Exercise and maintain a healthy weight to protect the joints.
  5. Get tested regularly for blood-borne infections.

  Dr. Sartaj Ali, Medical Officer, Lok Nayak Hospital, New Delhi educated the patients on the “Non-medical issues in haemophilia care”. The training session included various aspects of non-medical based issues in haemophilia care that the patients has to suffer right from the birth after diagnosis continuing straight through infancy, adolescence, adulthood with progressive demarcation of individual health and living status. Key points of the discussion included  diagnosis, educating on bleed episodes, psychological care, absenteeism, family support and  economic expenses.

The programme was carried further by Dr. Monika Sharma, Physiotherapist, HDCC, LN Hospital to address the “benefits of physiotherapy” in Haemophilia care. The topics were sub-divided under headings of physical, psychosocial and socio-economics to categorize the field were probable benefits could be reaped. The physical benefits such as muscle strengthening, reduction of bleeds, less detoriative hemarthropathy, psychosocial benefits lower anxiety level, increased confidence and self-esteem, more functional days and with lesser need of factor replacement therapy. The programme ended with a vote of thanks by Dr. Naresh Gupta and all the patients and the relatives were served with refreshments.

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