Delhi Government’s Haemophilia Centre (HDCC) at MAMC & LN Hospital celebrated the World Haemophilia Day on Tuesday 15th April 2015, 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 “HaemomRlo ” 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- HaemomRlo, were focused at the following activities mentioned below:
- Highlight the success achieved under the “ONE COUNTRY, ONE TREATMENT”programme during the last year 2014-2015
- Release of “Self-infusion brochure”
- Highlight“Self-infusion programme for young achievers”
The HaemomRlo event commenced with early morning registration (Participants: 588) of the invitees and the other college and hospital staff at 7.30 A.M. Large hoardings advertising HaemomRlo 2015, could be seen all over the MAM College campus. The auditorium and adjacent space was beautifully 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 2015 souvenir T-shirts along with food coupons for breakfast and lunch. Later they were routed to the Dean’s Carpet. A number of fun-based activities awaited for different age groups engaging all including the children, teenagers, parents, artists and writers.
The fun activity “We shall overcome” commenced at around 8:00 AM consisting of essay writing and painting competition for kids. The theme chosen on occasion of World Haemophilia Day was something related to their personal experiences. About fifteen young PWH expressed their thought on the essay topic “I am a haemophilic, so what” and “Haan, mujhe hain haemophilia” (Hindi). On the other side of the garden, about 30 young PWH sketched artistic painting on the theme “Living with Haemophilia” or “Jeevan ke rang, haemophilia ke sang”(Hindi).
Apart from this, fun activities for the elders included musical chair, … Three winners at the end of each round were gifted a pack of chocolates.
After this fun-activity session, all participants were escorted to MAM College Auditorium for a formal inauguration ceremony. On this auspicious ceremony, Shri. A. K. Aggarwal, Additional Director General Health Services, Government of India was invited as the Guest of Honour who was heartily welcomed and greeted with bouquet along with the other special invitees (i) Dr. Deepak K. Tempe, Dean, Maulana Azad Medical College, New Delhi (ii) Dr. Siddhartha Ramji, Medical Superintendent, Lok Nayak Hospital, New Delhi (iii) Dr. Dharmendra Kumar, Director, Pundit Deen Dayal Upadhyay Institute of Physically Handicapped, New Delhi and (iv) Dr. Saroj Kumar, Vice-Principal, Ahilya Bai College of Nursing, 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 Guest of Honor Shri. R. Bhattacharya 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. Elegantly designed crystal HaemomRlo 2015 mementos were presented to all the guests.
On the event of World Haemophilia Convention on 15th April 2015, HDCC launched “A Brochure for Self-infusion”. This brochure was published to inform the PWH about the successful self-infusion programme for young haemophilic kids that would enable them to master the technique of self-infusion and imbibe confidence within the child. The brochure delivers systemic approach and knowledge on the self-infusion procedure, its training modules, duration of training, patient eligibility and such related information to help the PWH understand better and associate with the programme. Currently this brochure was launched only in English which may be translated into other languages with the advance of the SIT program.
Later an introductory note on the current facilities at our Haemophilia centre was delivered by Dr. Gupta. He also highlighted the past achievements related to haemophilia advocacy and treatment propagation under the “ONE COUNTRY, ONE TREATMENT” campaign. The fifteen volunteers who participated in the first batch of self-infusion program were rewarded haemophilia patient utility kit (which contains high quality medical grade items i.e. gel-based hot and cool pack, compression bandages, elbow guard, knee guard, sorbo ball, a coloring book, a notebook, oil pastels and a water bottle all packed in one back-pack bag for comfortable carrying and usage) and certificate of training completion.
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.
ONE COUNTRY, ONE TREATMENT.
Dr. Naresh Gupta highlighted the achievements of our Haemophilia Centre at MAMC & LN Hospital during the past year, and the national level advocacy programmes undertaken for widening the haemophilia care services in the country. He also announced that the time has come for “ONE COUNTRY, ONE TREATMENT” a project which was formally launched on this day.
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. He also highlighted the various clinical research activities being run in our Haemophilia Centre including the one on the role of muscle nutrition, Vitamin D & parathormone and bone densitometry in musculoskeletal functioning in patients with haemophilia. He desired to take the haemophilia care not only far & wide within the country but to make it comprehensive and social.
The HaemomRlo 2015 was interspersed with a presentation of arts by the haemophilic community. A haemophilic child, Madhav Malik aged 12years dedicated a song expressing a child’s love for her mother while playing on keyboard and later a group rap-song performance by Vishal, a haemophilic patient aged 18years along with his two other friends Bhaskar & Arjun giving out a motivational message. The HDCC team along with other undergraduate students from our college performed a skit on haemophilia to highlight the common myth and wrong notion about the disease and deliver correct diagnostic and therapeutic information.
Token of appreciation and vote of thanks was proposed by Dr. Naresh Gupta.
Refreshment and valediction was provided to all the participants including the haemophilic community, their families, friends, relatives, VIP guests, faculty members, staff and site support.
In summary, HDCC was able to invite and strengthen the union of the haemophilic patients and their families, friends, well-wishers, care providers and other stakeholders on a common platform for increasing awareness about the disease and educate about the available treatment facilities, thereby to motivate and build a positive mental and social assurance of well-being.
Naresh Gupta
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