“LIFE WITH HAEMOPHILIA – Sikho Aur Sikhao”
A programme titled “LIFE WITH HAEMOPHILIA – Sikho Aur Sikhao” was conducted on 12th Nov 2016 with the collaboration of The Haemophilia Centre and Self Help Group for Haemophilia Community at Ahilia Bai College of Nursing, Lok Nayak Hospital, New Delhi-110002 under NNHF funded projects (HATS).
The key highlights of “LIFE WITH HAEMOPHILIA – Sikho Aur Sikhao” were focused at the following activities mentioned below:
- Launching of ID card for Haemophilia patients developed by HDCC.
- Empowerment of Self Help Group for Haemophilia.
- Distribution of Haemophilia kits to participants of Self Infusion Programme.-
- Discussion about Psycho-social challenges of hemophiliacs.
- Discussion about Status of hemophiliacs and their position in society.
- Planning for hemophiliacs for day to day activities.
- Effect of patient to patient communication.
“LIFE WITH HAEMOPHILIA – Sikho Aur Sikhao” event commenced with early morning registration (Participants: 200) of the invitees and the other college and hospital staff at 7.30 A.M. Large hoardings advertising “LIFE WITH HAEMOPHILIA – Sikho Aur Sikhao”, 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 a soothing background music and a joyous sense of feeling filled the atmosphere.
All participants were guided to the Auditorium for a formal inauguration ceremony. At this auspicious ceremony, Dr. Deepak K Tempe was invited as Chief guest who was heartily welcomed and greeted with bouquet along with the other special invitees (i) Dr. J. C. Passey, Medical Director, Lok Nayak Hospital, New Delhi (ii) Dr. V. K. Gupta, Director Professor,PSM Department,MAMC (iii) Mrs. Lily Basu, Pricipal, Ahilia Bai College of Nursing, LN Hospital, 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. An introductory note on the current scenario of haemophilia at our centre as well as the upcoming treatment facilities were also discussed by Dr. Gupta.
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 guest, patients with haemophilia along with other eminent personalities.
The Guest of Honor Dr. J. C. Passey 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 “LIFE WITH HAEMOPHILIA Sikho Aur Sikhao” mementos were presented to all the guests.
On the event of “LIFE WITH HAEMOPHILIA – Sikho Aur Sikhao” HDCC launched ID cards for Haemophilia patients. Launching of ID card was done by Dr. Deepak K Tempe.
Distribution of Haemophilia kits to participants of Self Infusion Programme was done by all special invitees to 13 patients. This “Haemophilia Patient Utility Kit” would serve the purpose of immediate home care preventive treatment on account of any bleeding episodes/injury for the needy haemophilic patients. The kit was procured under a NNHF project. It included 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.
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 highlighted the importance of “Sikho Aur Sikhao” in Haemophilia community.
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.
Inspirational deliveries were conveyed by three haemophilic patiens. Mr. Vaibhav Nehra, Mr. Arvind Sharma and Mr. Madhav Malik. They shared some insidents of their life.
Open House and expert panel discussion was conducted by Dr. Naresh Gupta, Dr. Sandeep Garg, Professor Department of Medicine & Dr. Sartaj Ali, Consultant, Pathology. Following points were highlighted and discussed during the session:-
- Empowerment of Self- Help Group for Haemophilia.
- Government support for Haemophilia community.
- Psycho-social challenges of hemophiliacs.
- Status of hemophiliacs and their position in society
- Behavior of other peoples towards hemophiliacs.
- Financial problems of hemophiliacs.
- Volunteer participation and support of other peoples to Self-help Group
- Treatment options available for haemophilia other than AHF.
- Role of mother and hurdles & bleeding episode management.
- Planning for hemophiliacs for day to day activities.
- Effect of patient to patient communication.
Dance & culture programme was conducted by Haemophilic Children. Skit presentation based on “LIFE WITH HAEMOPHILIA Sikho Aur Sikhao” was conducted by HDCC staff and MAMC Dramatic’s society.
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 and Self Help Group for Haemophilia were 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.
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