GUILLERMO NICOLÁS PIRAZZINI A positive attitude is a great help
If you have haemophilia, your blood can’t coagulate. 420,000 people live with haemophilia. Bleeding is painful and mainly internal into muscles and joints. Over time, these bleeds can cause arthritis and disability.
HAEMOPHILIA FACTS • Haemophilia is usually an inherited disorder in which your blood doesn’t clot normally. • Haemophilia almost always affects males while mothers are genetic carriers of the condition. • Less than half of the estimated 420,000 people with haemophilia worldwide have been diagnosed. • The word haemophilia derives from two Greek words: haima, meaning blood, and philia, meaning affection. • A small injury, for example a cut from a paper, will not cause severe bleeding for a haemophilia patient. Internal bleedings into muscles and joints are often more serious. Source: World Federation of Hemophilia, www.wfh.org
GUILLERMO NICOLÁS PIRAZZINI
INTERNAL BLEEDS Internal bleeds are usually the biggest problem for people with haemophilia. Most of these bleeds happen in the joints, especially the knees, elbows and ankles. The blood fills cavities within the joints, which can cause discomfort and pain. Untreated, these bleeds can cause severe damage to the joints.
UNDERSTANDING LIFE WITH HAEMOPHILIA While many people who live with haemophilia are in good control and lead the lives they wish to, the condition can pose challenges for some. Psychosocial issues often critically affect the lives of people with haemophilia and their families. Among others, these issues can include:
parents • S ome mothers feel a ‘special guilt’ as carriers, and – as key carers for their sons – this guilt can have a negative impact on care, manifesting itself as passiveness and despair. • P arents may also have problems finding the balance between protectiveness and over-protectiveness, which may hinder the child’s confidence. • I n-home treatment can be very daunting for patients, with their lack of experience causing anxiety.
Secrecy •M any people with haemophilia are very careful about informing others they have a bleeding disorder.
stigmA •M any people with haemophilia acquired HIV/AIDS through treatment with contaminated blood products in the 1970s and 1980s. This has led to a stigma becoming associated with haemophilia.
Employment • P eople with haemophilia may be restricted to non-physical work, which limits opportunities. • T hey may have to take more time off than their colleagues because of their haemophilia. • T hese factors may lead to financial hardship and feelings of dependency for people with haemophilia and their families.
• T his secrecy may in part be caused by the lack of understanding of bleeding disorders amongst the general public.
the difference between
myths and knowledge
Living with haemophilia Guillermo lives in Cordoba City, Argentina, where he works as a graphic designer for an advertising agency. Outside work, he goes to the gym three times a week, spends time with his girlfriend, and enjoys a good meal with his friends now and then. When Guillermo was first diagnosed with haemophilia, treatment was difficult and time consuming. “It meant weeks on end of needles and yet more needles,” he recalls. Around 2000, Guillermo started using a new treatment programme. “That’s when things changed,” he says. “My bleeds were under control in 72 hours at most, and for mild cases I would just use one dose of treatment.” Aside from his treatment, Guillermo has relied on his support network to make living with haemophilia easier. “I have a great group of people who support me through all this. My family above all, my girlfriend and my friends, all of them show so much understanding and patience. Also, the doctors who have treated me over the past 25 years have been great,” he says. A positive attitude has also been a great help. “I’m generally a positive person and, with my condition, I try to see the glass as half full, not half empty. Haemophilia can impose many limitations, but mostly I have been able to do what I have wanted,” Guillermo explains.
GUILLERMO NICOLÁS PIRAZZINI
CHANGING POSSIBILITES IN HAEMOPHILIA® Novo Nordisk is committed to Changing Possibilities in Haemophilia®, working towards a future where all people living with haemophilia, with or without inhibitors, have the opportunity to lead the life they desire. To reach this goal, we work to: • S trengthen understanding of haemophilia in society through an active role in World Haemophilia Day activities and through initiatives such as HERO. • I mprove rates of diagnosis and access to care through our commitment to the Novo Nordisk Haemophilia Foundation, which focuses on awareness creation and improving diagnosis.
• Advance treatment through innovation by drawing on our industry-leading pipeline portfolio and by supporting education and global haemostasis research with programmes such as Access to Insight.
Our work to change possibilities in haemophilia is based on more than 20 years of research into bleeding disorders and on our promise to listen to, learn from and work with people with haemophilia, their carers and healthcare professionals.
hero Haemophilia Experiences, Results and Opportunities
is an international initiative guided by the HERO International Advisory Board and supported by Novo Nordisk. HERO aims to build a comprehensive understanding of life with haemophilia as seen from the perspective of people with haemophilia, their families and their healthcare providers. Learn more, visit www.herostudy.org What are the insights? The HERO study surveyed 1,386 people in 11 countries, making it the largest ever multi-national, multi-method study of life with haemophilia. Key insights into the challenges facing people living with haemophilia uncovered by the HERO study are: Burden: Psychological or psychiatric conditions are reported by many, yet few receive treatment. Many people with haemophilia report being in constant pain. Relationships: People with haemophilia face challenges in forming relationships and haemophilia influences the quality of their sex lives. Knowledge: Gaps in knowledge among schoolteachers and others caring for a child with haemophilia is a source of parental dissatisfaction. Employment: People with haemophilia and parents are often educated and working but haemophilia challenges job options. Barriers: There is considerable country variation when it comes to access to care and in-home treatment.
Novo Nordisk is changing possibilities for people with haemophilia. Every step of our journey is focused on improving treatment and care for people. Our formulation for haemophilia with inhibitors was an innovation of its time, but our commitment is not limited to just one innovation. With our strong pipeline and our partnerships with the haemophilia community around the world, we will continue to drive fundamental and ongoing change for people with haemophilia in the future.