Participants: 698
Delhi Government’s Haemophilia Centre (HDCC) at MAMC & LN Hospital celebrated the World Haemophilia Day on Wednesday 13th April 2016, in MAMC Auditorium and complex, New Delhi with intense enthusiasm and active support from the haemophilic community and the haemophilia care staff.
This haemophilia convention was named as “Haemo-Utsav” implying the celebration of life with haemophilia. Pre-preparations for this day were started well in advance months before, to invite the participation from all patients with haemophilia, their families, friends, relatives, well-wishers, clinical and nursing personnel, physiotherapist, social-counsellor, paramedical and other support staff from our HDCC team along with the others associated with LN Hospital & MAM College, New Delhi, India.
The key highlights of this year’s Haemophilia Day Convention- HaemoUtsav 2016, were focused on the following activities mentioned below:
- Highlight the success achieved under the “ONE COUNTRY, ONE TREATMENT” programme during the last year 2015-2016
- Release of “Manual for Haemophilia- 2ndEdition”
- Highlight“What makes a Haemophilic self-reliant”
The HaemoUtsav event commenced with early morning registration (Participants: 698) of the invitees and the other college and hospital staff at 7.30 A.M. Large hoardings advertising HaemoUtsav 2016, could be seen all over the MAM College campus. The auditorium and adjacent space were decorated with flowers, carpets and colorful balloons, accompanied with the cheerful and supportive PWH (Persons with Haemophilia) their relatives, family members and other well-wishers.
At the Auditorium entrance, the PWH and their escorts queued along the two registration desks where after successful registration, each individual was gifted a HaemoUtsav 2016 souvenir T-shirts along with food coupons for breakfast and lunch. Later they were routed to the Dean’s Carpet where a number of fun-based activities awaited for different age groups engaging all including the children, teenagers, parents, artists and writers.
The fun activity “Everybody is a winner” commenced at around 8:00 AM. The first round of activity planned for PWH was a general knowledge based quiz named “G.K. Booster”. Second round was mainly targeted to involve their parents and relatives only. The family members showed high enthusiasm to participate in sack-race competition. Another third round was intended for the PWH based on word-building using alphabets. Additional two games “ring-a-roses” & “ulta-pulta” (parents only) was also organized which made everybody enjoy.
After this fun-activity session, all participants were escorted to the Auditorium for a formal inauguration ceremony. On this auspicious ceremony, Shri. D.K. Tempe, Dean, Maulana Azad Medical College was invited as the Guest of Honour who was heartily welcomed and greeted with bouquet along with the other special invitees (i) Dr. Yogesh Kumar Sarin, Medical Superintendent, LN Hospital (ii) Dr. Ashok Mittal, CMO (SAG), LN Hospital and (iii) Ms. Mandar Chauhan, Director, Pandit Deen Dayal Upadhyay Institute for Physically Handicapped, New Delhi
Dr. Naresh Gupta, Director Professor and Head, HDCC, MAMC & LN Hospital, New Delhi, India welcomed the Chief guest and the special invitees for their auspicious presence and also delivered a welcome speech for the audience at large. The speech was followed by a Vandana prayer by the nursing students from Ahilya Bai College of Nursing followed by a customary lamp-lighting ceremony by the invited guests, patients with haemophilia along with other eminent personalities.
The Chief Guest expressed his gratitude, and was deeply impressed by the large turn-out of the haemophilia community comprising of patients with haemophilia, their families, friends and other audience present in the auditorium. He congratulated Dr. Naresh Gupta and his team for their yeoman’s service done for the welfare of haemophilia. He also praised Dr. Gupta for his sincere efforts in establishing and delivering such excellent health care services in the field of haemophilia and taking his Haemophilia Centre to the apex level making it the largest centre anywhere. Mementos inscribed with HaemoUtsav 2016 were presented to the Chief Guest and Special invites.
On the event of World Haemophilia Convention on 13th April 2016, HDCC launched “A Manual for Haemophilia- Second Edition”. The published brochure was launched with the aim to educate the PWH and their family members about Haemophilia in a language simple to understand. It also consisted a detail chapter on self-infusion to help train the new PWH on the technique. A previous record of PWH trained under this programme was also highlighted.
Soon after this, a short tea break followed. All the participants and guests gathered in the garden area adjacent to the auditorium complex, to enjoy breakfast and refreshments.
My experience with self-infusion: Patient perspective
Participant under this session, formed of those who were trained in our first batch of self-infusion training programme. They openly shared their self-infusion experience with his fellow patients and their family members. He expressed the sense of freedom which he enjoys now after having successfully trained in this technique. He further said that this programmes does not only make one self-dependent but also proves to be of great use under emergency bleed conditions and specially when AHF is available with the patient. In such scenario, the patient can take the primary treatment and later visit a Haemophilia Centre for follow-up and care. It also boasts a huge amount of confidence when the patient is not within the reach of Haemophilia Care centre, i.e. when travelling, on vacations, during examinations and other such scenarios.
Later, Dr. Gupta stressed on the different activities and programmes being run in our Haemophilia Centre, be it the comprehensive care, or the focused projects on haemophilia awareness and training programmes (HATS), diagnostics especially for the inhibitor status and carrier screening, for capacity building and most importantly the patient empowerment through regular patient meets, self-help groups for haemophilia, and their active involvement in decision on newer haemophilia care initiatives.
The HaemoUtsav 2016 was interspersed with a presentation of arts by the haemophilic community. A 10 minutes skit was performed by the undergraduate students of MAMC. The presentation was centred around “Towards a self-reliant haemophilic” theme. The hsort play demonstrated the various day-to-day difficulties faced by a PWH amidst incorrect diagnosis, lack of treatment option, false myth and beliefs, rejection from social community, employment problems etc.
This was followed by an Open-house round where our panelist Dr. Naresh Gupta, Dr. A.K. Mittal, Dr. A. Aggarwal and Mr. Rajesh Tomar answered the various queries put forward by the patients and their well-wishers. Lastly a token of appreciation and vote of thanks was proposed by Dr. Naresh Gupta.
Refreshment and valediction were provided to all the participants including the haemophilic community, their families, friends, relatives, VIP guests, faculty members, staff and site support.
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