On 16 April 2011, Novo Nordisk employees organised a pop concert in aid of World Haemophilia Day.  Thanks to their efforts, nearly 57,000 DKK was raised and donated to the Novo Nordisk Haemophilia Foundation to support a patient camp for 80 young people in Goa, India. 

Funded by the donation and organised by the Hemophilia Federation India (HFI), the camp brought together for the first time 80 young men  - pictured right - from local haemophilia groups (known as chapters), who had been identified as having the leadership skills to mobilise the haemophilia community in India. 

With only a 12% diagnosis rate of haemophilia in India, the HFI’s efforts to raise awareness of the condition are much needed.  Dr Ghosh, President of the HFI, explains further:

“As well as lack of diagnosis, there is a lack of multi-disciplinary care such as physiotherapy and orthopaedic surgery.  Haemophilia doesn’t come up during standard medical training – it isn’t included in exams and doctors don’t see many patients with haemophilia.  When someone comes to see them with joint pain, they do not always think about the possibility that it is haemophilia.”

To improve the diagnosis rate and quality of care, the HFI wants the Indian government to set up haemophilia centres at district hospital level to ensure more people can access adequate care.  It also wants to establish one HFI chapter per district, which would help hospitals in developing a better situation to deliver effective haemophilia care.

The camp provided a platform to share ideas on awareness raising activities, learn more about the practicalities of living with haemophilia (such as e.g. the importance of exercise and physiotherapy), as well as how to manage their local groups more effectively to reach out to more members and raise funds.   

During the event, the framework for a ‘Leadership Manual’ was presented, which will enable participants to pass learning on to their peers.  Each participant will also develop an action plan for their chapters, outlining the challenges facing their local haemophilia communities and how they will address them.

With some participants undertaking 72 hour journeys to attend the camp, their commitment to the cause was clear.  Explaining why the focus on youth is so important, Mukesh, HFI’s national youth leader, says:

“We want this camp to provide a platform for older leaders to pass on their knowledge and learning to the next generation of leaders who will strengthen the HFI’s network and drive forward its objectives at a regional as well as national level.”  Asked if the focus on leadership and group mobilisation is a reflection on India’s culture, Mukesh replies, “No, it is not our culture that unites us, it is our haemophilia.”

NNHF saw first-hand the energy, enthusiasm and drive of all participants striving to improve not only their own lives, but the lives of their peers and most importantly of the future generations affected by haemophilia.  With many of the participants having spent months and even years confined to their beds due to the condition, it is not difficult to understand why.  But the group knows there is a long way to go, as Mukesh explains:

“Whilst we have covered a lot during this camp, we need to ensure that regional chapters have the resources and skills they need to drive forward their action plans.  This was the first ever time that over 30 chapters from across India have been able to meet in one place – we want to make this an annual event so that we can keep up momentum and build on what we learn year on year.”

Ending with a message for Novo Nordisk employees, Mukesh says, “I cannot thank enough every single one of you who gave your time, creativity and money to help make this camp possible. We have taken the first steps in developing a united group to improve haemophilia care and we are confident that with your continued support, we can take on this challenge.”

NNHF was delighted to be able to participate in the camp and be inspired by participants’ stories and their dedication to improving haemophilia care.

With his tattooed arms and aviator sunglasses, Mukesh may not look like a typical leader.  A self-professed rebel, Mukesh explains, “Having lost two brothers to haemophilia, my parents were understandably protective of me when I was growing up, which I think brought out my rebellious nature.”  Now 38, Mukesh has spent the last years channelling these qualities into carving out a role as HFI’s youth leader.

Throughout our conversation, Mukesh deals calmly with the constant flow of interruptions – directing boys with bleeds to the correct treatment rooms, and co-ordinating the arrival of participants from across India.  Mukesh was preparing stand down as leader at the end of the year, but it is clear that his legacy won’t be forgotten by the boys here: “When I was 17 I had a CNS bleed and spent a month in bed.  It was Mukesh who visited me, kept me motivated and encouraged me to do exercises at home” explains Pradip Ray, aged 18 from Gwahati Chapter.

Mukesh wants this camp to provide a platform for older leaders to pass on their knowledge and learning to the next generation of leaders who will strengthen the HFI’s network and drive forward  the HFI’s objective at a national level.  Asked if the focus on leadership and group mobilisation is a reflection on India’s culture, Mukesh replies, “No, it is not our culture that unites us, it is our haemophilia.”

Taking over the leadership role from Mukesh won’t be easy, but if there’s one person who can do it, it’s Premroop.  In contrast to Mukesh’s extrovert leadership style, Premroop exudes a calm confidence.  He is softly spoken, yet when he speaks, people listen.  A successful business owner, Premroop started the Bangalore Chapter Youth Group and was instrumental in a lobbying campaign, resulting in free factor being made available in the state.

For Premroop, this first AGM is a platform where the group can express their views and find ways of giving back to the haemophilia community.  Undaunted by the challenge of taking on the youth leader role, Premroop shows his fighting spirit, saying, “People with haemophilia are warriors – we know how to overcome any obstacle in our path.”

Posing in the pool for photos, this could be India’s hottest boy band on a photoshoot for their latest album cover.  In fact, these four boys are members of the HFI’s Mumbai Chapter.

During the first session where each participant introduced themselves and their Chapter, the boys refused to do individual introductions, choosing instead to introduce themselves as a unit, “We don’t believe in saying ‘I did this’ or ‘I achieved that’.  It is only about what ‘we’ do.”  Emphasising this point further, they explain, “We believe in unity within the haemophilia community.  We are like brothers, passing through the same experiences.  We want our organisation to grow which will benefit us and give a better life and future for people with haemophilia.”

The group plan to take their learning from the camp back to their chapter, so that all members are united in their aims.  A priority for this group is raising awareness of haemophilia, which will help them in their mission to create a dialogue with the Indian government.  “We want people to understand that haemophilia is a manageable problem, it’s just about working out how to manage it.”

Drawing a crowd of impressed onlookers, Chandru is on his twentieth press-up and still counting.  Looking at him now it’s hard to believe that Chandru, who has severe haemophilia A, was once confined to his bed, unable to walk or move his shoulder.

"There was a point when I was in bed that I thought ‘my life is over’.  But through physiotherapy I was able to walk again and regained mobility in my shoulder.  From physiotherapy I progressed to body building.  Now I exercise regularly and rarely have a bleeding.  Sport has changed my life!”

Chandru will use his leadership skills to inspire his peers and let them know that appropriate exercises can be beneficial for haemophilia:

“Sometimes people with haemophilia don’t want to exercise because they think it’s bad for their joints.  But as long as they get tailored support from a physiotherapist on what exercises they can do, it can actually make joints stronger – I am proof of that!”